UNDERSTANDING THE EXPERIENCES BREAST CANCER: A OF STAGE IV
QUALITATIVE INQUIRY OF A STAGE IV DIAGNOSIS
By

Karly J. Downs

A DISSERTATION

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

Human Development and Family Studies - Doctor of Philosophy

2014

ABSTRACT
UNDERSTANDING THE EXPERIENCES OF STAGE IV BREAST CANCER: A
QUALITATIVE INQUIRY OF WOMEN WITH A STAGE IV BREAST CANCER
DIAGNOSIS
By

Karly J. Downs

Women with Stage IV breast cancer face a multitude of stressors associated with
treatments, illness, mortality, and creating a quality life. The current study examines a sample of
10 women from across the United States, who are living with diagnosed Stage IV breast cancer.
Through the combination of two theories, comprehensive task model and relational
understanding of life and death, a set of semi-structured individual interview questions were
created to assess the multifaceted experience of living with this diagnosis. The purpose of the
interviews was to capture the lived experiences of the women, gain an understanding of what
adds to and takes away from creating an optimal quality of life, and to gain an understanding of
the needs of this population throughout their experience. A phenomenological analysis approach
was utilized and a conceptual model of quality of life and needs is presented. Results show that
making meaning through relationships, faith, and finding purpose in life were the major factors
in creating quality of life and body deterioration and financial stress were the major themes that
took away from life quality. Additionally, personal characteristics and Stage IV specific
characteristics were also important within the experience. Connection and education were the
two identified needs of this sample. Clinical implications, limitations, and future research are
presented.

Copyright by
KARLY J. DOWNS
2014

I dedicate this thesis to my family. First to my husband, my partner in life, my rock, Dr. Adam
Downs. You have helped me in every way to become the person I am today and to accomplish so
many goals in my life. Second, to my daughter Harper Jo Downs. I hope to be a constant
inspiration in your life. Your strength inspires me daily. And finally, to my mother, Kathy
Redburn, my father, Jack Redburn and my sister, Dr. Danielle Redburn-Whittle. I love you all
very much. Thank you for the journey that has led me to such success. You have all help me to
become the person I am and have been a constant support in my educational goals. Thank you
for always being there for me.

iv

ACKNOWLEDGEMENTS

There are many people who have worked toward the completion of this dissertation. First, I
would like to thank and acknowledge Dr. Adrian Blow. You have been there for me from the
very first year of graduate school and have helped me to become a more skilled therapist,
academic and writer. Thank you for your constant guidance and for all of your hard work.
Second, I need to thank my husband, Dr. Adam Downs. You have supported me emotionally
throughout this entire process and for that I am truly grateful. Thank you for being you! Third, I
need to thank my parents and my sister. Education was always an expectation and never a
question. This belief, and the example of my older sister, led me to the completion of my
degrees. Thank you for always believing in me and in the power of education. I would also like
to thank my in-laws, Myra and Fred Downs. You both supported me in so many tangible ways,
particularly in giving me time to write this dissertation. Without you, this document may have
never been finished. Thank you for your unwavering support.

v

TABLE OF CONTENTS

LIST OF TABLES………………………………………………………………...………..….….x
LIST OF FIGURES……………………………………………………………………………....xi
CHAPTER 1: INTRODUCTION…………………………………………………………………1
Background of Problem…………………………………………………………………………...1
Purpose of Study…………………………………………………………………………………..5
Theoretical Framework Guiding the Study………………………………………………………..6
Comprehensive task-model approach……………………………………………………..6
Component 1: Personal history and social context……………………………….9
Component 2: Cognitive appraisal………………………………………………..9
Component 3: Adaptive tasks……………………………………………………...9
Component 4: Coping skills……………………………………………………...10
Component 5: Outcome………………………………………………………….10
Relational understanding of life and death………………………………………………11
Research Questions………………………………………………………………………………14
Relevance of the Study…………………………………………………………………………..16
CHAPTER 2: LITERATURE REVIEW………………………………………………………...19
Medical Treatments and Physical Symptoms……………………………………………………20
Breast Cancer: Physical Disease but Mentally Draining………………………………………...22
Range of Adaptation……………………………………………………………………………..23
Psychological Impact of Stage IV Breast Cancer………………………………………………..24
Theory and Literature……………………………………………………………………………25
Personal history…………………………………………………………………………..26
Social context…………………………………………………………………………….27
Cognitive appraisal………………………………………………………………………28
Adaptive tasks……………………………………………………………………………30
Coping skills……………………………………………………………………………..32
Life and death……………………………………………………………………………34
Quality of life…………………………………………………………………………….35
Relational distress………………………………………………………………………..37
Stage IV Specific Psychological Interventions…………………………………………………..38
Conclusions………………………………………………………………………………………47
CHAPTER 3: METHODOLOGY……………………………………………………………….49
vi

Research Design………………………………………………………………………………….49
Overview of approach……………………………………………………………………49
Qualitative research……………………………………………………………………...49
Phenomenology…………………………………………………………………………..51
Research bias…………………………………………………………………….52
Procedures………………………………………………………………………………………..53
Sampling procedures……………………………………………………………………..54
Determining sampling sites………………………………………………………………54
Recruitment………………………………………………………………………………54
Inclusion and exclusion criteria………………………………………………….56
Sample description……………………………………………………………………….56
Data collection…………………………………………………………………………...59
Individual semi-structured interviews……………………………………………59
Data preparation………………………………………………………………………….60
Data analysis……………………………………………………………………………..60
Role of the Researcher……………………...……………………………………………………61
Trustworthiness…………………………………………………………………………………..61
Confirmability……………………………………………………………………………61
Dependability…………………………………………………………………………….62
Credibility………………………………………………………………………………..63
Transferability……………………………………………………………………………65
Consideration of Human Subject Issues…………………………………………………………66

CHAPTER 4: RESULTS………………………………………………………………………...67
Personal History and Social Context…………………………………………………………….67
Participant 1……………………………...………………………………………………68
Participant 2…………………………..………………………………………………….70
Participant 3……………………………………………………………………………...72
Participant 4……………………………………………………………………………...74
Participant 5……………………………………………………………………………...75
Participant 6……………………………………………………………………………...77
Participant 7……………………………………………………………………………...78
Participant 8……………………………………………………………………………...79
Participant 9……………………………………………………………………………...80
Participant 10…………………………………………………………………………….81
Cognitive Appraisal……………………………………………………………………………...83
Reacting to the diagnosis………………………………………………………………...83
Accepting the diagnosis………………………………………………………………….85
Reality of diagnosis………………………………………………………………………87
Adaptive Tasks…………………………………………………………………………………...90
Physical…………………………………………………………………………………..90
Treatment side effects……………………………………………………………90
Future body deterioration……………………………………………..…………92
Psychological………………………………………………………………………….....94
Mortality…………………………………………………………………………94
vii

Need for connection……………………………………………………………...97
Need for education…………………………………………….………………..100
Social……………………………………………………………………….…………...101
Family support……………………………………………………….…………102
Family difficulties………………………………………………………………104
Friends/community……………………………………………………………..106
Spiritual…………………………………………………………………………………109
Vocational………………………………………………………………………………112
Leaving work……………………………………………………………………113
Health insurance………………………………………………………………..115
Coping Skills……………………………………………………………………………………117
Making meaning………………………………………………………………………..117
Relationships……………………………………………………………………118
Faith…………………………………………………………………………….119
Life purpose…………………………………………………………………….120
Outcome………………………………………………………………………………………...122
Understanding Stage IV Breast Cancer………………………………………………………...125

CHAPTER 5: DISCUSSION…………………………………………………………………...128
Summary of Findings…………………………………………………………………………...128
Linking Theory and Experience………………………………………………………………...130
Personal history/social context…………………………………………………………131
Cognitive appraisal……………………………………………………………………..133
Adaptive tasks…………………………………………………………………………..134
Coping skills……………………………………………………………………………137
Outcome………………………………………………………………………………...138
Relationship between life and death……………………………………………………139
Conceptual Model………………………………………………………………………………140
Clinical Implications…………………………………………………………………………....146
Couple and family therapy/medical family therapy…………………………………….146
Group therapy…………………………………………………………………………..147
Education……………………………………………………………………………….148
Limitations……………………………………………………………………………………...149
Future Research………………………………………………………………………………...150
Conclusion……………………………………………………………………………………...151

APPENDICES………………………………………………………………………………….152
Appendix A: Breast Cancer Stage Specifications………………………………………153
Appendix B: Recruitment Flyer………………………………………………………...157
Appendix C: Participant Informed Consent…………………………………………….158
Appendix D: Participant Demographics Form…………………………………………163
Appendix E: Interview Guide…………………………………………………………..164
Appendix F: Transcription Confidentiality Agreement ………………………………..169

viii

BIBLIOGRAPHY………………………………………………………………………………170

ix

LIST OF TABLES

Table 1.1: Possible Relationships with Death……………………………………………………12
Table 1.2: Theory, Research and Interview Questions…………………………………………..14
Table 2.1: Common medical treatments and side effects………………………………………..20
Table 3.1: Demographic Information……………………………………………………………58
Table 3.3: Meaning Units and Themes…………………………………………………………..64
Table 4.1: Quality of Life Participant Rating (Scale 0-10)……..………………………………123
Table A.1: Stage Designation for Breast Cancer……..………………………………………...153

x

LIST OF FIGURES

Figure 1.1: Samson and Siam (2008)….………………………………………………………….8
Figure 5.1: Conceptual Map of Quality of Life………………………………………………...145

xi

CHAPTER 1: INTRODUCTION
Background of the Problem

A diagnosis of breast cancer is complex with many variations within the illness. Breast
cancer has eight main classifications or stages. As stages increase, the severity of the disease
increases exponentially with Stage 0 been the mildest form and Stage IV incurable. The staging
system was created by the American Joint Committee on Cancer to provide a strategy designed
to group patients based on prognosis. When a diagnosis is made, stage is determined by
examining tumor size, lymph node status, estrogen-receptor and progesterone-receptor levels in
the tumor tissue, human epidermal growth factor receptor 2 status, menopausal status, and the
general health of the patient (Singletary, et al., 2003) (see Appendix A for table of Stage
specifications). There are several differences that can be observed between each stage of breast
cancer. However, a diagnosis of stage IV breast cancer is the only stage where a distant
metastasis is found. The occurrence of a distant metastasis is defined as the spread of cancer
from the primary tumor or lymph nodes to another area of the body. Commonly, breast cancer
will metastasize in distant lymph nodes, bones, liver, lungs, or brain, but can spread to anywhere
within the body (American Cancer Society, 2011). Women diagnosed with breast cancer may
also develop or progress from a lower stage diagnosis to a Stage IV status when evidence of the
spread of cancer is found.

In 2013, 232,340 women were diagnosed with invasive breast cancer, compared to
64,640 diagnoses of in situ breast cancer or cancer confined to the original location where the
cancer developed (American Cancer Society, 2013). Invasive breast cancer is defined as cancer
that has broken through the glandular wall where it originated and grows in surrounding breast
1

tissue. More specifically approximately 6% of women diagnosed with breast cancer will
eventually present with a Stage IV diagnosis (Surveillance, Epidemiology, and End Results
Program, 2007). When a woman is diagnosed as Stage IV, by definition, the prognosis is poor. A
poor prognosis refers to the high mortality rate and a limited length of life. Among those
diagnosed with stage IV (breast cancer that includes distant metastases), 24% of the population
will survive up to 5 years as compared to 99% of women with localized breast cancer (American
Cancer Society, 2013). Other studies have shown that from the time of diagnosis, women will
have an average survival rate of 2-4 years (Hortobagyi, 2002; Williams & Buchanan, 1982).
These findings indicate that a stage IV diagnosis leaves women with a strong sense of mortality
and diminished hope for the future.

Women with this diagnosis have a multitude of treatments available (e.g. hormone
therapy, drug therapy, chemotherapy, mastectomy, or oophorectomy) and combinations of
treatments are typically utilized. Unfortunately, there is no known treatment, nor combination of
treatments that has been found to cure established Stage IV breast cancer (Chunlestskul, Carlson,
Koopmans, & Angen, 2008). Although a cure has not been found, recent research has examined
whether specific medical treatments improve survival at the level of Stage IV (Dominici, et al.,
2011). When examining the use of surgery to remove the primary tumor where cancer originated,
no improvements were found with a sample of 551 patients with diagnosed Stage IV breast
cancer. The mean of survival for treatment versus control were 3.4 years and 3.5 years
respectively. These types of findings illustrate the severity of the development of metastatic
breast cancer.

2

Curability of metastatic breast cancer is difficult to define. When is the cancer considered
to be “cured”, is a question that many researchers struggle with. Stage IV breast cancer is
difficult to treat with rate of survival the ultimate outcome as opposed to cancer remission that
can be seen in other stages of breast cancer (Chunlestskul, et al., 2008). In a review of several
studies examining the effects of systemic treatments for limited metastases (cancer that has
spread only to the regional lymph nodes and not to other areas in the body), some treatments
have been found to be beneficial in increasing the survival rate with 3%-30% of women included
in studies having found a “personal cure” or a combination of treatments that increase their
survival between 5 and 20 years (Hortobagyi, 2002). This wide variation in survival time is
dependent on many variables including age, health of the individual, treatments utilized, and the
like.

Women with stage IV breast cancer have many psychological needs and concerns when
compared to other stages of cancer. Breast cancer that has spread leaves women with no option
of a cure, but with the need for systemic treatments that can cause pain, discomfort, anxiety, and
depression. Additionally, thoughts of mortality and the limitation of life are evident for this
population. Due to these factors, the psychological needs of this group of women is great, as
fears and anxieties around health and dying are severe (Classen, Koopman, Angell, & Spiegel,
1996). For many of these women, surviving cancer or celebrating the idea of being a cancer
survivor is not a part of their story due to the high level of mortality and limited life expectancy.
This creates difficulties in that these women may be reluctant to reach out to the breast cancer
community where there is a great focus on survival and “beating” cancer. Women with a Stage
IV diagnosis likely will not spend another day in their lives without cancer and in fact, most have
limited time left to live.
3

One study of 66 women newly diagnosed with stage IV breast cancer examined their
levels of distress. Physical and psychological symptoms were assessed through self-report
questionnaire. Women commonly reported feelings of sadness, lack of energy, sweats, feeling
irritable, coughing, feeling nervous, lack of appetite, dry mouth, and pain. In this study, semistructured qualitative interviews were also utilized to further assess the reaction to this diagnosis.
Women reported that uncertainty, anger, lack of communication with doctors, worry for family,
and stress were frequently experienced (Turner, Kelly, Swanson, Allison, & Wetzig, 2005). The
combination of multiple stressors can lead to difficulties physically and psychologically, but can
also influence the quality of life that these women experience.

Increasing quality of life and addressing unmet needs of women with late stage breast
cancer are key factors in helping this population (Aranda, Schofield, Weih, Yates, Milne,
Faulkner, & Voudouris, 2005). Quality of life and health related quality of life have been
examined within the literature specific to this population. In an examination of 361 women
representing all stage classification of breast cancer, women with metastatic breast cancer are
found to have the lowest rates of health related quality of life (Lidgren, Wilking, Jonsson, &
Rehnberg, 2007) as defined by five dimensions; mobility, self-care, usual activities, pain and
discomfort, and anxiety and depression. Quality of life specific to symptom severity and physical
functioning has also been examined, with women with non-metastatic breast cancer experiencing
better quality of life than those with metastatic breast cancer (Siddiqui, Given, Given, &
Sikorskii, 2009).

Quality of life concerns have developed into a wide variety of needs and psychological
distresses for this population. A study of 105 urban women, with metastatic breast cancer, were

4

examined to assess the quality of life and needs of women living with this form of cancer.
Overwhelmingly the most common unmet need for this sample was psychological and health
related information. Specifically, worries about loved ones, uncertainty about the future, fears
about physical disability or deterioration, and information on how to find help related to the
illness were the most commonly reported needs (Aranda, et al., 2005). Even though this is a
severe form of cancer, the literature has large gaps, especially when it comes to the emotional
and psychological wellbeing of this group and how they are able to maintain an optimal quality
of life in the face of this diagnosis. Musa Mayor, founder of the advocacy for advanced breast
cancer (AdvancedBC.org) explains the need in an article written for www.breastcancer.org
(Fiore, 2009), "Women with metastatic breast cancer are a neglected community. By that I don't
mean they receive inferior medical care, but their psychosocial and informational needs are often
not very well met."

Purpose of Study
This study adds to the understanding of women living with stage IV breast cancer, their
experiences with cancer, how these women are managing their lives, and what they do or desire
to have in order to live with an optimal quality of life in the face of such a demoralizing
diagnosis. Gaining an understanding from those who live each day with this disease is of
importance in order to create and enhance existing educational and therapeutic treatments for
women in this situation.
The findings from this study will inform future interventions with women with Stage IV
breast cancer. For example, the group treatment literature for women with breast cancer does not
clearly differentiate the specific needs and difficulties that women with Stage IV cancer face

5

compared to those with Stage 0-III. Instead, most of the efficacy research specific to
psychoeducational and supportive group treatments either exclude women with such a severe
stage of breast cancer or they are included in a general group of women with all stages.
Understanding the unique situation of these women will expand the breast cancer literature,
inform those who are currently conducting psychosocial treatments for women living with Stage
IV breast cancer, and provide insights into what needs to be added to current interventions
specific to this population. Additionally, this research will help to inform research and practice
on ways to address the relational needs of this population by assessing how family and
community influence the quality of life of these women. To date there is no research specific to
the family relationships and how they influence quality of life for women with a Stage IV
diagnosis. The current research will shed light on the role that family and community plays
within this disease.
Theoretical Framework Guiding the Study
This study will utilize two theories that will guide the research questions. The
“comprehensive task-model approach” to coping with a chronic illness (Samson, & Siam, 2008)
will be the base for the theoretical model with the “relational understanding of life and death”
(Wright, 2003) as an additional perspective to increase the understanding of the influence that
death has on an individual. The process of coping with a terminal illness and facing mortality is a
key factor in understanding the experiences and needs of a population of women with Stage IV,
terminal breast cancer.
Comprehensive task-model approach. Samson and Siam (2008) began their work by
identifying two paradigms that exist in the literature on coping with death and dying; stage

6

paradigms and task based paradigms. Stage based models (e.g. Kubler-Ross, 1969) have been
historically criticized for the linearity and limitation to individual variations. The task based
paradigm represents a more fluid approach that focuses on tasks to be accomplished as opposed
to stages. Samson and Siam (2008) embraced the paradigm of tasks due to its focus on
reconstructing a persons’ existence in the process of adapting to a terminal illness.
A task has been previously defined by Corr (1992) as work that must be completed by
those coping with mortality with an outcome of reconstructing a specific aspect of life that is
affected by chronic illness. Samson and Siam (2008) utilize this definition in their theoretical
model and embrace the previous literature on tasks. Specifically there are four sources from the
task based paradigm that have been integrated in the creation of their comprehensive model;
Moos and Tsu (Coping with Physical Illness, 1977), Cohen and Lazarus (Coping with the Stress
of Illness, 1979), Corr (A Task-based Approach to Coping with Dying, 1992), and previous
research conducted by Samson (2006). By combining aspects from the previous literature,
Samson and Siam (2008) constructed a task based model that included five components; the
patient’s personal history and social context, cognitive evaluations of the disease, adaptation
tasks, coping skills, and final outcome (see Figure 1.1).

7

Figure 1.1: Samson and Siam (2008)

8

Component 1: personal history and social context. Component one of the model refers
to an individual’s personal history and how it relates to their ability to adapt both positively and
negatively. Specifically personal history includes ethnic origin, socio-economic status, life
transition experience, and quality of social support networks (Moos & Tsu, 1977). Through the
combination of these elements, Samson and Siam (2008) capture the individual variables that
play a role in the process of adapting to terminal illness.
Component 2: cognitive appraisal. Component two represents the idea that individuals
do not have the same response to diagnosis of a chronic illness due to the differences in
perception. For this reason, two forms of cognitive appraisal are utilized within the model to
address these differences; primary appraisal and secondary appraisal (Cohen & Lazarus, 1979).
Primary appraisal refers to the process of conceptualizing how the illness will influences the
individual’s wellbeing. Secondary appraisal refers to the evaluation of coping resources to
manage the demands of the illness. Samson and Siam (2008) identify this process as what allows
for the completion of tasks.
Component 3: adaptive tasks. Component three is considered the core aspect of the
model and the component that encompasses the specific tasks that represent aspects of human
functioning (Corr, 1992). These tasks include five categories; medical, social, psychological,
spiritual and vocational. Medical tasks refer to meeting the needs of the physical body and
adhering to the requirements proscribed by the health professionals. Social tasks aim to gain
positive social support from significant others such as family and friends. Psychological tasks
refer to the maintenance of a sense of control in one’s life and in regulating the emotions of the

9

individual. The spiritual tasks are those that contribute to the meaning given to the illness and the
consequences of that illness. Finally the vocational tasks (added by Samson and Siam to Corr’s
task base model) refer specifically to the activity in paid and non-paid work such as occupational
work or volunteer work that helps in the creation of meaning in life, social status, and
establishing personal identity.
Component 4: coping skills Component four of the comprehensive task-based model
consists of the coping skills utilized in the adaptation to the illness. Coping skills are seen as the
specific means utilized to accomplish many of the adaptive tasks in component three. Coping
skills can be both positive and negative in nature and are both mental and behavioral in nature.
Examples of coping skills include denying the crisis, seeking out information, requesting
emotional support, setting concrete goals or finding purpose in life (Samson & Siam, 2008).
These coping tactics can be preexisting in the individual or learned during the process of
adaption to the illness.
Component 5: outcome. The final component in this adaptation model is the outcome.
Samson and Siam (2008) utilize two possible outcomes taken from Moos and Tsu (1977) and
Cohen and Lazarus (1979). The two possible outcomes are either, a) positive or b) negative.
Positive outcomes include the illness being seen as less disruptive in the person’s life with a new
found state of psychosocial equilibrium. Negative outcomes include a degree of psychological
distress and overall decline in the individual.
Overall, Samson and Siam’s Comprehensive Task-Model Approach to adaptation
illustrates the process in which an individual deals with a chronic illness. This model identifies
the complex nature of this process and the multitude of individual aspects that are brought into

10

that process. This model gives a clear understanding of the path that one must travel to reach a
point of adaptation to illness.
Relational understanding of life and death. The adaptation that will be undertaken by
the dying individual and those around them can be seen as the road that must be traveled and the
presence of death can have an impact on that journey. For this reason it is important to have an
added understanding of the relationships that can be created between life and death (Wright,
2003). The relational understanding of life and death came from a qualitative analysis of men
and women in a hospice setting who were coping with death and dying. As with Samson and
Siam (2008), Wright was challenged to expand the well-known stages of coping with death
model (Kubler-Ross, 1969) and create a broader explanation of the experience of death and
dying. Through in-depth interviews of 12 dying patients and 24 family members, Wright (2003)
set out to understand the experiences of those who were terminally ill (and their families) and
dealing with the inevitability of death. This undertaking led to the creation of a fluid and
individualistic model to help explain how the dying and their families view life and death as a
result of the prospect of death.
After the analysis of in depth interviews, Wright, (2003) concludes that there is a
relational component that emerges when death is in the near future. Participants within her study
described a relationship between life and death, where the two concepts were interconnected and
had great influence on one another. Specifically, Wright (2003) describes six possible
relationships that can emerge as a result of both living and dying concurrently. The possible
relationships include, imprisoned by death, seize the day, seize the death, life and death
transformed, silenced by death and waiting for death. Table 1.1, offers an explanation and
example to illustrate each relationship.
11

Table 1.1: Possible Relationships with Death
Relationship

Explanation

Example

Imprisoned by Death

Participants in this category
reported a constant thought of
death. Death had an influence
on every aspect of life and
limited the participant’s
ability to look to the future,
make plans or even enjoy the
life they had left to live.

“So the future has been taken from
us. You can’t dream about growing
old together. We can’t, I mean it’s
like the future has suddenly been
taken from us.”

Seize the Day

Participants that seized the
day reported a new found life
meaning. As they were faced
with death they began to live
life more fully then before.
New found appreciation for
life was created.

“I looked death in the eye, and now I
am living…This life is a lot better
than the one before.”

Seize the Death

Seize the death referred to
participants who created a
new found interest in their
own death. Participants
researched symptoms of their
disease and how they would
deteriorate. They found a
curiosity in the process of
death and the afterlife.

“I feel like I’m getting ready to take
a journey that you take once in a life
time. . . . And I don’t know

Life and Death
Transformed

This relationship refers to
participants who found new
meaning in life and in death.
The definition of dying was
transformed into a journey
and a new form a life. Death
was not the end of life but
part of life.

“It’s not really death, but eternal
reality. A doorway…It’s looking
beyond this life with the expectation
of being with Him [Jesus] in His
presence…A rejection of death.”

Silenced by Death

Participants in this
relationship had a fear of
discussing death and a strong
denial that death was
inevitable.

“Interviewer: Both of you have very
strong faith…but do you ever think
about him dying?

12

what that’s like. I don’t know where
it’ll end. I don’t know where it
begins, and uh, it’s rather
exciting. I find it extremely exciting.”

Respondent: No, he’s not going to
die. No.”

Table 1.1 (cont’d)
Waiting for Death

Participants who were
waiting for death had a focus
on death but not one that was
imprisoning, one that was
inevitable. This relationship
includes the acceptance of
death and that it would occur
in the near future.

“It was certainly intense, to a
place that I hadn’t ever been
before-just attending death.
Waiting.
Death is the next portal, and
you don’t know where or
when it’s gonna be.”

Examples taken from Wright, 2003, p. 442, 443, 445, 446, 448, 450.
The relationships that are formed are only examples of those that can develop and Wright
(2003) makes it clear that these are not mutually exclusive. This explanation of coping with
death does not limit the types of relationships that can occur, but makes the case that, more
importantly, a relationship does occur. When death is presented in a “real” fashion, through
terminal illness, this presence influences how individuals and those around them view the
interconnectivity of life and death. Due to this interconnectivity, Wright (2003) argues that, “a
person’s dying cannot be understood without intimately understanding his or her life…” (p. 452).
The experiences of one’s life directly affects how they will view and cope with death and the
relationship that will develop between living and dying.
The theoretical framework proposed represents the relational understanding of life and
death (Wright, 2003) in combination with the process of adaptation to illness (Samson & Siam,
2008) as a way of understanding the complexities of dealing with death and dying. The added
relational understanding to the task-model approach to adaptation gives a richer understanding of
the depth in which mortality can impact a person’s experience. The relationship between life and
death influences the cognitive appraisal, adaptive tasks and coping skills utilized to come to
either a positive or negative outcome. The proposed research will add to this theoretical
13

framework by assessing the individual stories of life and death to inform the literature and future
interventions that can address the specific needs of this population.
Research Questions
This study will answer the question, “What are the lived experiences of women in late
stage breast cancer, what helps them to live with this diagnosis, and what contributes to and what
impedes, their optimal quality of life?” The answer to this question will inform the current
research on women with Stage IV breast cancer and what needs to be included to create
interventions for women with Stage IV breast cancer. To answer this question, this qualitative
study will include specific research questions based on the theoretical framework presented and
interview questions specific to each research question. Table 1.2 illustrates the connection
between theory, research and the development of interview questions.
Table 1.2: Theory, Research and Interview Questions
Theoretical Tenets

Research Questions

Interview Questions

Personal history and
social context:
1. Event related
factors

What are the lived
experiences of women
with stage IV breast
cancer?

a. What has been your experience
with cancer from diagnosis to
today?
b. What have been the most
significant milestones throughout
your cancer experience?
c. Why were these significant for
you?

2. Background and
personal
characteristics

What characteristics of
the person and of their
background influenced
the cancer experience?

a. How have your past experiences
(e.g. your childhood, values, life
experiences), prior to your
diagnosis, influenced your cancer
experience?

14

Table 1.2 (cont’d)
3. Physical and
socio-cultural
environment

What are the
environmental factors
that influence the
experience?

a. Tell me about the things in your
[environment, culture,
community, family], that affected
your cancer experience.

4. Primary
cognitive
appraisal (event
seen as a threat)

How do woman react
to their diagnosis and
how do they make
sense of having a
terminal illness?

a. How did you react to your
diagnosis?
b. Have you come to terms with
your diagnosis?
c. If yes, how? If no, describe what
you are struggling with?

5. Secondary
cognitive
appraisal (event
seen as a
challenge)

How do women
receiving a terminal
diagnosis face up to the
challenge of cancer?

a. When you received your
diagnosis, what did you wish you
knew then that has helped you
along the way to overcome the
challenge of cancer?

6. Physical

What physical
demands are placed on
the body and how are
they met?

a. How did you adapt to the
physical symptoms of the disease
and the effects from treatments?

7. Psychological

What impedes healthy
psychology and how do
women create
emotional balance, a
positive self image, and
autonomy?

a. Describe your emotional
reactions to the diagnosis?
b. What have your psychological
responses been to the diagnosis?
c. How have you overcome these?

8. Social

What social supports
are needed in the
experience of cancer
and how are they
established?

a. How have family, friends and
community supports contributed
to your experience with your
illness?

Cognitive appraisals:

Adaptive Tasks:

15

Table 1.2 (cont’d)

9. Spiritual

How is spirituality
affected through the
cancer experience and
how is it cultivated?

a. What role has spirituality played
in living with cancer?

10. Vocational

What influence does
the cancer have on
work and recreation?

a. How has your work and
recreational life been effected by
your cancer?
b. How have you responded to this?

Coping Skills

What coping skills are
utilized throughout the
experience of cancer?

a. What have you done individually
to cope with your disease?
b. What psychosocial interventions
have you participated in? (e.g.
therapy, groups, family therapy,
consultation with religious figure)
c. Did these help and why or why
not?

Outcome:

What contributes to,
and impedes optimal
quality of life?

a. Describe your quality of life.
b. How would you rate your life
quality on a scale from 1-10?
c. What would need to be present in
your life to make it better?

b. How is balance
created in everyday
life?

a. How do you create balance in
your life, personally, socially,
spiritually, etc.?

11. Quality of life

12. Psycho-social
equilibrium
Relationship between
life and death

How does this
population view life
and death subsequent
to their diagnosis and
throughout their cancer
experience?

Relevance of the Study
16

What are your thoughts and feelings
regarding life and death?
a. Has the meaning of life changed
for you?
b. Have your thoughts on death
changed?

The current study is relevant for several reasons. First, the literature on interventions for
women with Stage IV breast cancer is limited. Specifically there is a lack of psychosocial
research that has been conducted on this population, but more importantly there is a severe lack
in diversity of the research that exists. Much of the research on interventions for women with a
diagnosis of Stage IV breast cancer (Spiegel, et al., 1981; Spiegel, et al., 1983, Spiegel, et al.,
1989; Classen, et al., 2001; Goodwin, et al., 2001; Geise-Davis, et al., 2002; Spiegel, et al., 2007;
Butler, et al., 2009) is monopolized by many of the same researchers and utilize the same
supportive-expressive group foundation. This study will be utilized to inform the formation of
alternative interventions for women with metastatic/stage IV breast cancer. The qualitative data
will illustrate some of the specific needs that this population is lacking and what information and
methodologies are the most beneficial to increasing the quality of life for this population.

Secondly, the qualitative analysis will change the focus of much of the research on group
interventions from a focus on increasing the survival time of women with metastatic breast
cancer, to finding ways to increase quality of life in the time that they have left to live. Increasing
survival time is a common outcome measure used to assess intervention efficacy. Shifting the
focus from trying to increase survival and length of life to creating quality life, regardless of time
left to live, is a more beneficial and attainable goal. The ways in which quality of life will be
addressed will come directly from the information gathered from women representative of the
Stage IV breast cancer population.

Finally, this study will give voice to a population of women who are absent from much of
the psychosocial literature for women with breast cancer. By utilizing qualitative methodologies
this study will gain a greater depth of understanding into the experiences of having and living

17

with a stage IV diagnosis. Additionally, this study will expand the limits of self-report
assessments which are represented in much of the literature, to help in the creation of beneficial
and efficacious interventions for this population of women. The breadth of the breast cancer
literature is lacking in qualitative analysis for this population of women, how they experience
their severe cancer, what needs they have physically, psychologically, socially and spiritually
and how death and mortality influence their lives. For women with metastatic breast cancer
relationships between life and death are extremely relevant and through this study that relevance
will be captured.

18

CHAPTER 2: LITERATURE REVIEW
Breast cancer is a frequently occurring disease. In 2010 approximately 261,100 women
were diagnosed (American Cancer Society, 2010) with 1 in 8 women receiving a diagnosis of
breast cancer at some point in their lives (Ries, 2005).These numbers represent a significant
proportion of women who face the many difficulties that are prevalent in the face of a breast
cancer diagnosis. Among this population there is great variation in the severity, symptoms, and
prognosis. Due to the multitude of factors that influence the severity of this disease, the
American Joint Committee on Cancer has provided a staging system to help understand and
classify the differences in breast cancer severity (see Appendix A).
There are eight distinctive breast cancer stages (i.e. 0, I, IIA, IIB, IIIA, IIIB, IIIC, IV).
The stage diagnosis system has three categories of variation that are utilized in understanding the
typology of the breast cancer. These categories include information on the primary tumor,
information specific to the regional lymph nodes surrounding the tumor, and absence or presence
of a distant metastasis. A distant metastasis is the presence of cancer cells that are not localized
to the primary tumor or regional lymph nodes, but which have spread to other areas within the
body (Singletary, et al., 2003). The information specific to tumor refers to the size of the tumor
(from 0.1cm to > 5cm) and the placement of the tumor (i.e. in the breast, attached to the chest
wall or attached to the skin). The regional lymph node status is determined by the presence or
absence of cancerous cells in lymph nodes that are regional to the breast and the type of lymph
nodes that are affected (i.e. axillary, ipsilateral axillary, internal mammary, ipsilateral internal
mammory, infraclavicular, supraclavicular). All stages of breast cancer, regardless of severity
have some physical and psychological effects on the women that receive the diagnosis, both
from the diagnosis itself and from the treatments that follow. Stage IV breast cancer, however, is
19

defined as the most severe form of breast cancer with the woman having cancer appear in both a
primary tumor, regional lymph nodes and the cancer appears in another area of the body (distant
metastasis).
Medical Treatments and Physical Symptoms
The literature regarding the differing types of medical treatments for women with
diagnosed breast cancer is abundant. New and experimental treatments are emerging all the time;
however, there are several treatments that are commonly utilized with some if not all stages of
breast cancer. Table 2.1 describes a sample of some of the standard treatments for breast cancer
along with commonly experienced physical side effects
Table 2.1: Common medical treatments and side effects.
Type of
Treatment
Surgery

Basic Description

Common Side Effects of Treatment

Mastectomy: Removal of all breast tissue.
Common utilization of this surgery occurs when a
tumor is larger than 5cm or if the breast is small
and lumpectomy would leave too little breast
tissue.
Lumpectomy: Removal of the tumor and a small
amount of tissue surrounding the tumor. This
procedure can be as effective as Mastectomy
when the cancer is central to one site in the
breast, the tumor is under 4cm and there are no
cancer cells in tissue surrounding the tumor.
Lymph node removal: The removal of infected
lymph nodes. This surgery is utilized in
combination with Mastectomy or Lumpectomy to
determine the extent of the cancer as cancer in the
lymph nodes is associated with an increased risk
of cancer cells in other parts of the body.

Chemotherapy

The injection of one or more medicines that
prevent cancer cells from growing and spreading
by destroying the cells and stopping them from
dividing.

20

Lumpectomy: Pain in healing, possible
distortion of the breast, need for
radiation therapy, possible drain,
possible infection.
Mastectomy: Removal of breast, pain in
healing, possible drain, possible
infection, need for prosthesis or
reconstruction, stiffness in arm.
Lymph node removal: Risk of
lymphedema (swelling of soft tissue in
the arm, hand, breast, trunk or abdomen
due to fluid build up), pain in healing,

Anemia
Diarrhea

Table 2.1 (cont’d)
Fatigue
Fertility issues
Hair changes
Infection
Memory loss
Mouth/throat sores
Nausea
Vomiting
Weight changes
Radiation
Therapy

The use of a specialized high energy beams that
damage the cell DNA to stop cell division.

Red and irritated skin
Armpit discomfort
Chest pain
Fatigue
Heart problems
Lowered white blood cell count
Lung problems

Hormone
Therapy

Medicines taken to lower the amount of hormone
estrogen in the body and to block the action of
estrogen on breast cancer cells.

Bone and joint pain
Nausea
Vomiting
Fatigue
Hot flashes
Headache
Blood clots
Mood swings

(Retrieved from www.breastcancer.org, October, 11 2011

The decisions on what types of treatments are used depend on the stage of breast cancer,
the health of the person, and prognosis. These decisions need to be carefully considered and
21

made in collaboration with the individual with breast cancer, the oncologist, physicians, and
others caring for the individual.

Breast Cancer: Physical Disease but Mentally Draining

Cancer is a disease of the cells, where invasion and destruction of tissue create life
threatening conditions; in addition, treatment for this cancer can have physical effects such as
pain, nausea, and the like. Mentally, however, this disease can be just as ruinous as it is
physically. There is strong evidence to suggest that a diagnosis of breast cancer brings a
substantial increase in negative emotions and psychological distress, specifically anxiety and
depression (Compas & Luecken, 2002; Epping-Jordan, et al., 1999; Millar, Purushotham,
McLatchie, George, & Murray, 2005). This distress does not simply begin and end with the
cancer, but can also be persistent months and even years after the diagnosis, due to fear of the
cancer re-emerging, the continued need for doctors’ appointments, and the strain that this disease
can put on the individual and those around them.

Literature presents strong evidence that psychological symptoms are common among
women with breast cancer. Through the use of interviews, focus groups, and batteries of
assessments, women have been examined in order to understand the psychological distress that is
experienced (Ferrell, Grant, Funk, Otis-Green, & Garcia, 1997; Spencer, et al., 1999). Concerns
among women range broadly, but there seems to be consensus that realities of breast cancer
diagnosis and treatment exist such that pain, threat of death, harm from treatments, healthcare
bills, uncertainty, and sexuality/sexual functioning, play a role in breast cancer diagnosis,
treatment, and survival (Ferrell, et al., 1997; Spencer, et al., 1999; Yurek, Farrar, & Andersen,
2000). These types of concerns can lead to difficulties in psychological distress such as anxiety,
22

depression, and difficulties in adjustment. In one study, a sample of 400 women was assessed in
the first year after receiving a diagnosis of breast cancer. It was found that one quarter of the
women maintained clinically significant levels of psychological morbidity as assessed by the
General Health Questionnaire throughout the one year period (Millar, et al., 2005). This study
illustrates the severity of the psychological symptoms that can occur in women with breast
cancer. Breast cancer has a clear influence on the psychology of those who suffer with it.

Range of Adaptation

The diagnosis, treatment, and survival of breast cancer are experienced differently by each
woman. Although research has shown that all endure a certain level of negative psychology,
there are differences that have been found among the breast cancer population. A multitude of
variables can influence the psychological adjustment to cancer including personal variations such
as level of optimism (Epping-Jordan, et al., 1999; Jones, Cheng, Jackman, Rodin, Walton, &
Catton, 2010), social support (Carver, Smith, Antoni, Petronis, Weiss & Derhagopian, 2005;
Compas & Luecken, 2002; Lindop & Cannon, 2001), age (Epping-Jordan, et al., 1999; Jones,
Cheng, Jackman, Rodin, Walton, & Catton, 2010; Lindop & Cannon, 2001), stage of diagnosis,
and the types of treatments that are utilized (Lindop & Cannon, 2001; Yurek, et al., 2000).
Psychological distress, as defined by anxiety, depression, and other difficulties adjusting to the
disease, also varies within the process of diagnosis and treatment, with the highest psychological
distress reported near time of diagnosis and a drop in distress subsequent to surgery (Carver, et
al., 1993). Although distress may be reduced for some post treatment, evidence shows that others
experience symptoms of distress throughout the process, at diagnosis, during treatment, and post
treatment (Jim, Andrykowski, Munster, & Jacobsen, 2007). Specifically the period post

23

treatment has been shown to be distressing as this is a “waiting period” where patients are
waiting to see the outcome of the treatment (Arnold, 1999).

As with many chronic illnesses, adaptation is dependent on the individual case, the
support that they receive, the severity of the disease, and the ability to cope. Although specific
dispositional factors influence levels of distress and intrusive thoughts, the coping mechanisms
that are utilized are important predictors in levels of anxiety and depression (Epping-Jordan, et
al., 1999). One study using a sample of 80 women, suggests that across all stages of the disease,
the utilization of coping strategies such as problem solving and cognitive restructuring were
associated with less distress both at three and six months post diagnosis. Coping strategies of
self-criticism and social withdrawing behaviors predicted more emotional distress over the 6
month period (Epping-Jordan, et al., 1999). There are a large range of changes that women with
breast cancer experience, and the ways in which they react and choose to handle the symptoms
of the disease greatly predicts the amount of anxiety and depression that is felt.

An additional variable that is of importance is the stage of breast cancer. The stage of
cancer is related to the amount of psychological distress experienced. Evidence shows that the
variable of cancer stage is an important predictor of distress 6 months after diagnosis (Compas,
et al., 1999). Additionally, women experience symptoms of psychological distress due to a
poorer prognosis associated with stage severity. In other words, women who have a higher stage
diagnosis experience more psychological distress.
Psychological Impact of Stage IV Breast Cancer
The nature and prognosis of stage IV breast cancer creates a unique situation when
compared to other stage categorizations. Although, women with breast cancer, regardless of
24

stage, experience both physical and psychological distress, women with a stage IV diagnosis
have a poorer prognosis, and must endure multiple medical treatments that can include
combinations of surgery, chemotherapy, radiation therapy, and hormone therapy (Hortobagyi,
2002). This systemic treatment can lead to many painful and difficult physical symptoms and
side effects (see Table 2.1). In addition, the difficulties of dealing with a poor prognosis and the
effect that a diagnosis can have on the woman, as well as family and friends, creates a unique
experience of distress. “…Facing the prospect of a foreshortened future, in addition to the steady
decline of health, ongoing medical treatment, and the effect of the medical condition on loved
ones, is certain to bring forth an array of painful and difficult emotions [for women with stage IV
breast cancer]” (Classen, et al., 1996, p. 434). While this has been cited in the literature, there is
limited research that focuses directly on the psychological effects of metastatic or stage IV breast
cancer specifically; however, the diagnosis of stage IV is frequently seen to be more distressing
than stages 0-IIIC due to the severity of the disease at this stage (Warren, 2010). Evidence shows
that the psychological impact and physical symptoms of this disease, matched with facing
mortality is a unique experience for women with a stage IV diagnosis.
Theory and Literature
This form of breast cancer is a multifaceted experience influenced by a multitude of
factors, many of which are not thoroughly researched (Warren, 2010). The limited examination
of factors including personal history, social context, cognitive appraisal, adaptive skills, coping
skills, relationships with life and death, quality of life and relational distress can be seen within
the literature. These factors, in association with the theoretical framework of the current study,
give an overview of the literature specific to metastatic breast cancer and the psychological
impact that this disease can have on this population.
25

Personal history. Personal history refers to the individual aspects of a person’s
background and the experiences that they have had in their lives. These characteristics play a role
in how an individual adapts to illness (Samson & Siam, 2008). The literature on women with
metastatic breast cancer does not give a thorough illustration of the multitude of personal
variations that exist in women in this population. Although limited, research does allude to the
importance of examining personal history. Butler, Koopman, Classen and Spiegel (1999)
assessed how traumatic stress and past life events influence stress in women with metastatic
breast cancer. In a population of 125 women, severe intrusion and avoidance symptoms were
assessed in relation to the experience of having cancer. These symptoms were found to be related
to the circumstances of the individual’s current and past life experiences. Specifically, women
with metastatic breast cancer were found to be at elevated risk for these symptoms if they had
experienced a stressful life history (Butler, et al., 1999). The current life stress experienced in
regards to metastatic breast cancer coupled with past and current traumatic events were found to
overwhelm the women’s ability to cope with their disease in a healthy way. This study shows
evidence that a person’s history of stress and trauma influences that person’s capability to cope.
An additional study examined five women with metastatic breast cancer utilizing an in
depth phenomenological approach (Chunlestskul, et al., 2008a; 2008b). This research
specifically examined the women’s ability and capability to prepare for their death in the face of
a metastatic breast cancer diagnosis. Factors that enabled and inhibited the death preparation
were examined and the individual’s personal history was found to be an influential factor.
Having experienced difficult deaths in the past lead to feelings of guilt and worry regarding how
the woman’s personal death would affect those around her. Additionally, the individual’s
personal and cultural attitudes towards death were also a factor in how the women viewed the
26

preparation process of their own death (Chunlestskul, et al., 2008b). These personal history
factors influenced the emotions that were experienced around the thought of death (i.e. more
guilt and worry if difficult death had been experienced) and the actions taken in death
preparation (e.g. talking about death with family, creating a living will).
The list of personal history factors is not limited to experiences of death and
trauma/stressful events. However, the research on how personal history factors influence the
adaptation, coping, and experience of metastatic breast cancer is greatly underdeveloped. Further
personal history characteristics need to be examined to form a more thorough picture of women
with metastatic breast cancer.
Social context. The social context, according to Samson and Siam (2008), is linked to
personal history. However, social context has been examined, specifically, in the literature in
regards to how a women’s social context influences her experience of stage IV breast cancer.
Three studies have specifically examined the factor of social context. Turner-Cobb, Sephton,
Koopman, Blake-Mortimer, and Spiegel (2000) utilized cortisol levels to indicate how an
individual’s social context influences stress levels that are experienced with a diagnosis of
metastatic breast cancer. One hundred and twenty-five women with documented metastatic
breast cancer were examined. It was found that the greater quality of social support that the
women received from friends, family and community, the lower their cortisol concentrations.
This was indicative of healthier neuroendocrine functioning and less stress in the individual.
Additionally, those who were able to share pleasurable activities with others and who had more
tangible support also experienced lower levels of cortisol (Turner-Cobb, et al., 2000). These
researchers concluded that social support acts as a buffer for psychosocial stress and enables the
individual to perceive stressful events as less stressful.
27

Two additional studies found specific links between the social context of an individual
with metastatic breast cancer and how they experience their cancer. Butler, et al. (1999) found
that women with larger social networks reported fewer symptoms of avoidance and were better
able to handle their diagnosis. Additionally, having a larger network of close friends and family
available to interact on a daily basis led to less opportunity for isolation and greater opportunity
to think about and discuss their illness (Butler, et al., 1999).
The inclusion of a social network that includes women going through a similar disease
experience was also found to be necessary in the preparation for death (Chunlestskul, et al.,
2008b). Specifically it was found that women whose social context included other women with
metastatic breast cancer were able to experience feelings of validation and normalization as they
experienced challenges to mortality. Preparing for death along with the difficult emotions
associated with this, such as depression and anxiety, were normalized by their social networks
(Chunlestskul, et al., 2008b) as other women were experiencing similar feelings. This validation
and normalization led to a greater ability to cope as these women prepared to die.
The social context that women with metastatic breast cancer utilize has important
implications for how they experience their diagnosis, acceptance of their cancer, and preparation
for their death. Additional influences of social context need to be examined that reach beyond
these factors and create greater understanding of the types of social relationships that are most
beneficial in an attempt to help this population live in a healthy way and with a high quality of
life.
Cognitive appraisal. Samson and Siam (2008) utilize the tenet of cognitive appraisal as
a way to explain how those with chronic illness react to and find meaning in their situations. The

28

literature specific to women with metastatic breast cancer examines cognitive appraisal with a
focus on primary cognitive appraisal; conceptualizing how the illness will influence the
individuals’ wellbeing (Cohen & Lazarus, 1979) and seeing the event as a threat (Samson &
Siam, 2008). In an examination of the psychological reactions to the prognosis of metastatic
breast cancer, women responded with feelings of disappointment, sadness, anxiety, and worry
about the future (Svensson, Brandber, Einbeigi, Hatschek, & Ahlberg, 2009). Additionally,
women with stage IV breast cancer have reported feeling bad-tempered, down, depressed, and
less tolerant than they had prior to their diagnosis (Luoma & Hakamies-Blomqvist, 2004).
Outside of emotional reaction, higher order philosophy has also been assessed. A sample
of one hundred women with a stage II (52) and stage IV (48) diagnosis were examined to
compare adjustment to the disease. It was found that women with a stage IV diagnosis held a
higher level of fatalism, the philosophy that future events are unchangeable and determined by
fate, which led to higher levels of anxiety and depression than those with a stage II diagnosis
(Schnoll, Harlow, Brandt & Stolback, 1998). Women with stage IV breast cancer more often
conceptualized their disease in terms of fatalism due to the incurability of metastatic cancer. This
range of emotional reactions to the disease is representative of primary cognitive appraisal and
shows how women react to having this disease and how they conceptualize their prognosis.
Unfortunately, literature specific to this population is limited in the examination of
secondary cognitive appraisal; the evaluation of resources, management of the illness (Cohen &
Lazarus, 1979), and seeing the illness as a challenge (Samson & Siam, 2008). The literature has
rarely moved beyond the initial reactions to the diagnosis of metastatic breast cancer. One study,
however, examined the characteristic of gratitude and the role of gratitude in women with
metastatic breast cancer (Algoe & Stanton, 2011). Gratitude can be seen as a secondary cognitive
29

appraisal as it is used as a resource to manage the illness and a way to combat distress associated
with the illness. In this study (Algoe & Stanton, 2011), a sample of 54 women with metastatic
breast cancer were assessed to examine their adaptive functions and emotional responses to
benefits encountered by this population. The social function of gratitude was a specific focus for
the research. It was found that women felt gratitude when they were able to conceptualize their
disease in a way that left them open to expressing their emotions and accepting support from
others (Algoe & Stanton, 2011).
Additionally, Schnoll, et al., (1998) found differences in secondary cognitive appraisal
between women with a stage II and stage IV diagnosis. For women with stage IV breast cancer,
conceptualizing the illness as hopeless was associated with greater levels of anxiety and
depression and lower quality of life. Additionally, positive attitude and positive reappraisal of the
situation were associated with lower levels of anxiety and depression and higher quality of life
(Schnoll, et al., 1998). The conceptualization and cognitive appraisal of the experience of
metastatic breast cancer has been shown to greatly influence how an individual experiences the
disease and her levels of psychological distress.
Adaptive skills. Adaptive skills are the specific tasks that make up human functioning
and are needed to create healthy adaptation to a chronic illness (Samson & Siam, 2008). In
accordance with the theoretical framework, these tasks are medical, social, psychological,
spiritual and vocational. Although there are a multitude of tasks that can be accomplished to lead
to healthy adaptation to metastatic breast cancer, the literature specific to this population has
only touched on a limited selection of specific tasks. Specifically, social, psychological and
vocational tasks have been the focus in the literature.

30

Algoe and Stanton, (2011) show strong evidence in the need of social adaptive skills and
the benefits that comes from completing social tasks. Welcoming interpersonal support and
seeing benefit in social interaction leads to greater levels of gratitude and positive emotions.
Conversely, when responsiveness to social support is low the supportive attempt can backfire
and lead to negative emotions from both the patient and the person providing the support (Algoe
& Stanton, 2011).
An additional example of social tasks can be seen in the process of preparing for death.
Seeking social support through individual counseling, group support, and talking with friends,
family and professionals has been found to help create greater success in adaptation to metastatic
breast cancer (Chunlestskul, et al., 2008a). More specifically, evidence shows that women with
metastatic breast cancer utilize a number of social tasks to adapt to their disease including
utilizing their faith community, spending time with pets, and airing concerns and thoughts with
friends and family (Svensson, et al., 2009).
Psychologically there are many tasks that can be completed to help in the process of
adaptation including regulating emotions, creating a sense of control wherever possible, and
creating a positive self-image (Samson & Siam, 2008). Literature specific to this population
suggests tasks such as analyzing thoughts, utilizing positive and mindfulness thinking (Svensson,
et al., 2009), expressing emotions (Classen, et al., 1996), and gaining knowledge and education
regarding treatments and the disease progression (Chunlestskul, et al., 2008a), can help to create
positivity and acceptance in the experience of metastatic breast cancer.
Vocational tasks utilized as adaptive skills have been less addressed specific to women
with stage IV breast cancer. Svensson, et al., (2009) was the only study to include the benefit of

31

women continuing to go to work as a way to create stability in their lives. Samson and Siam
(2008) see vocational tasks as a way to help create meaning within the chronic illness and
suggest tasks such as working a job and volunteering as a way to adapt to the situation. Literature
specific to metastatic breast cancer needs to further evaluate the vocational tasks that are utilized.
Additionally, specific spiritual tasks such as creating hope and meaning in the face of the
disease are underdeveloped and in need of further inquiry. Evidence shows that for women with
breast cancer in general, having a strong sense of meaning and peace with life at baseline
assessment and having an increase in meaning/peace over a 6 month period predicted a decrease
in depressive symptoms and an increase in vitality for a population of 418 women (Yanez, et al.,
2009). Additionally, an increase in meaning and peace in one’s life was related to improved
mental health and lower cancer related stress with having a sense of faith predictive of having
successful adjustment to breast cancer (Yanez, et al., 2009). Acceptance of a breast cancer
diagnosis is also associated with the development of a belief system that creates meaning in the
cancer experience (Blow, et al., 2011). The adaptive tasks of spirituality are important within an
overall breast cancer population and need to be assessed specifically for women with a stage IV
diagnosis.
Coping skills. The coping skills that women with metastatic breast cancer utilize to adapt
to their disease is an additional area that has been examined in the research. Coping skills are
seen as the means in which adaptive skills are accomplished and can be both positive and
negative in nature (Samson & Siam, 2008). As with all information regarding this population, the
research specific to coping skills is limited. However, there is evidence that the process of coping
with the disease mediates the psychological distress (as defined by anxiety and depression) and
quality of life of the women. Disease stage (i.e. stage II vs. stage IV) was not a direct predictor,
32

but influenced distress and quality of life through the mediation of coping styles (Schnoll, et al.,
1998).
Research has shown several differing coping skills that women with stage IV breast
cancer have utilized. Women with a stage IV diagnosis reported utilizing emotional expression
and a fighting spirit as a strategy of coping. It was found that these coping skills were associated
with reduced levels of anxiety, depression, hostility, confusion and fatigue in a sample of 101
women (Classen, et al., 1996). Additionally specific coping skills utilized in the reduction of pain
were assessed in a population of 80 women with metastatic breast cancer. The most common
coping strategies were withdrawal and inactivity, specifically relaxation, taking pain medication
and trying to accept their pain, (Arathuzik, 1991). Attempts to problem solve and reduce anxiety
and depression associated with the pain were also commonly observed as coping skills. The
individual coping, beyond dealing with symptoms of pain and the use of fighting spirit and
emotional expression have not been observed in the research.
The research on coping skills utilized in a stage IV population does include the coping
strategies associated with couple relationships (Badr, Kashy, Carmack, Cristofanilli, &
Revenson, 2010). “Couples facing stage IV breast cancer must cope with the stressors that can
affect both partners’ quality of life as well as the quality of life of their relationship,” (Badr, et
al., 2010, p. 169). A sample of 191 women with stage IV breast cancer and their partners were
examined on measures of distress, relational satisfaction, and coping styles. Results showed that
distress was experienced by both partners with differences in positive and negative coping.
Common positive dyadic coping included joint problem solving, coordinating everyday
demands, relaxing together, mutual calming, sharing, and expressions of solidarity. Common
negative dyadic coping involved mutual avoidance of the problem and withdrawal. Evidence
33

from this study shows that women and their partners who utilize negative coping experience
significantly greater levels of distress at all times with higher distress felt by the woman. In
contrast, the utilization of positive coping was found to be mutually beneficial in lowering
distress of the participants and in creating greater couple satisfaction for both parties (Badr, et al.,
2010).
Coping skills are of great importance to a population who faces mortality and must cope
with the many symptoms, both physical and psychological that are associated with the disease of
metastatic breast cancer. The narrow understanding of coping strategies of this population does
not illustrate a clear picture of the types of coping skills that this population utilizes.
Additionally, there are barriers to coping.
Life and death. Wright (2003) explores the relationship that is created between life and
death in the face of a chronic illness. Several examples of relationships that can be created in the
face of inevitable death are given and the importance of explore this relationship has been
shown. Specific to the population of women with stage IV breast cancer the examinations of the
processes that occur as death becomes more apparent are needed. Butler, et al., (2003) examined
a sample of 59 women with metastatic breast cancer and assessed their levels of psychological
distress and pain at three points in time (T1, T2 and T3), each closer to the death of the patient.
The means on all measures of psychological distress were stable from T1 to T2, but from T2 to
T3 showed significant increases in psychological distress (Butler, et al., 2003). Researchers
noted that it was not the self-reported pain nor the passing of time that accounted for these
significant increases, but rather, the closer one came to death the greater the psychological
distress that was experienced.

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To date, there has been only one set of studies that have examined the complex
relationship that women with stage IV breast cancer have with death. Chunlestskul, et al.,
(2008a; 2008b) examined the lived experiences of women with metastatic breast cancer in
regards to their preparations for death. In these two studies (Part I: Preparations and
Consequences and Part II: Enabling and Inhibiting Factors) 5 women were interviewed twice
about their experiences. Several findings from these studies speak directly to the relationship
between life and death that can be created. Generally, women prepared for death by
acknowledging their grief, preparing mentally, seeking information and support, preparing
family, and preparing for the end of life to come. Specifically, role delegating, letting go,
creating life projects (e.g. creating scrapbooks of memories, sharing life stories with family), and
living full and joyous lives within the time left, led to important outcomes including better
preparation for death, family and self-growth, peaceful feelings, and the learning of life lessons
(Chunlestskul, et al., 2008a). The main barrier to the above mentioned experience was the
negative social stigma associated with death which made preparation difficult. Attitudes, fears
and discomfort with the topic of death created some difficulties in holding discussions and
moving death from a negative to a positive light (Chunlestskul, et al., 2008b). Further research is
necessary to expand the literature specific to the relationship with death and to fully understand
the process that this population must endure.
Quality of life. Quality of life is one variable, in addition to the tenets of Samson and
Siam (2008) and Wright (2003) that differs between stages of breast cancer, and which grows
worse as the disease progresses, and is an important facet in the lives of women with metastatic
breast cancer. “Metastatic breast cancer is incurable…therefore, the goals of the treatment must
be palliation of symptoms and prolongation of life without compromising an acceptable quality
35

of life,” (Costantino, 2002, p. C17). This goal is difficult to achieve due to the multiple distresses
that these women endure. One study using a sample of 361 women of all stages showed that
women with metastatic breast cancer experience significantly lower scores on health related
quality of life. Additionally, increases in pain due to treatments and the distant metastasis along
with decreases in mobility which is more common for this population, lead to a lowered quality
of life (Lidgren, et al., 2007). The progression to metastasis has a greater threat to life which
increases emotional trauma and decreases quality of life (Siddiqi, et al., 2009).
The literature on quality of life and women with a stage IV diagnosis has focused on
quality of life factors specific to the treatments that this population encounters. In one study
using a sample of 210 women with metastatic breast cancer (Karamouzis, Ioannidis, & Rigatos,
2007), decreases in quality of life factors (including body image, sexual functioning, future
perspective, systemic therapy side effects, breast symptoms, arm symptoms and upset by hair
loss) were found to be common in those undergoing chemotherapy and more common in those
undergoing palliative care (i.e. treatment other than chemotherapy). Additionally, women who
were not undergoing chemotherapy (many of which were receiving radiation therapy)
experienced lowered levels of physical functioning, role functioning, and emotional functioning
(Karamouzis, et al., 2007). Chemotherapy and hormone therapy, for example, has been shown to
lead to experiences of induction in menopause, hot flashes, fatigue, and weight gain which cause
not only physical, but emotional and sexual problems, which creates a decrease in health related
quality of life (Weinfurt, et al., 2004). Unfortunately, the research on the topic of quality of life
and women with metastatic breast cancer is limited and there is a great need for prospective
studies that can accurately estimate the quality of life for this population (Karamouzis, et al.,
2007).
36

Relational distress. Living with cancer can also create relational distress. Specifically,
the literature is limited to examinations of couple relationship with only one additional study
examining the adaptation of this disease and the effects it can have on partners. This study
examined a sample of 125 women with stage IV breast cancer and a sub-sample of 48 of these
women and their partners. The study set out to understand the mood disturbance of these women
in relation to their partner status, quality of their relationship, and their partners’ coping and
mood disturbance (Giese-Davis, Hermanson, Koopman, Weibel, & Spiegle, 2000). Relationships
between distress such as anxiety, depression, fatigue, anger, confusion and vigor, and the couple
were found, with more distress reported when couple satisfaction was low, and higher individual
distress for the women with cancer when the partner reporter higher levels of mood disturbance.
The interconnection between distress and couple cohesion is evident in this study. Through the
lens of family systems, these findings are not unexpected with the commonly held belief that one
person in the family affects the entire family system (Becvar & Becvar, 2006). Therefore, the
distress and difficulties associated with a stage IV diagnosis are sure to affect each relationship
within the family.
The research specific to this population is clearly limited and in need of additional, indepth examinations of the specific nature of a stage IV diagnosis. Overwhelmingly, the literature,
although limited specific to this population, supports the notion that women with metastatic
breast cancer have uniquely difficult experiences when compared to those with other stages of
breast cancer. The incurability, multiple treatments, and physical and psychological symptoms
endured, leave this population in need of interventions to address these concerns. Specifically,
increasing the quality of life for this population is immensely important in improving the life that
these women have left.
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Stage IV Specific Psychological Interventions

Women with metastatic breast cancer have commonly not been included in much of the
literature on breast cancer interventions. The long term course of this stage of cancer and the
increase in difficulty to cure a cancer that has spread, places this population in great need.
Women with Stage IV metastatic breast cancer are a population that has been under-researched
in the breadth of intervention literature. Specifically there is a lack in diversity among
psychological interventions, with group intervention being the only approach represented in the
literature. Although there are limited studies that have focused on this specific population, a total
of twelve articles have examined group interventions with a population exclusive to a metastatic
or stage IV diagnosis. These group interventions utilize two main frameworks; supportive
expressive, and cognitive behavioral.

The research specific to the population of metastatic breast cancer began in the 1980s.
Spiegel, Bloom, and Yalom, (1981) conducted a support group for 86 women with documented
metastatic carcinoma of the breast. The sample was randomly selected to attend either the
treatment (support) group or a control group. Due to attrition (e.g. illness, weakness) 34 women
were placed into the support group and 54 were placed into the control group. The supportive
group intervention consisted of weekly, 1.5 hour meetings with groups composed of 7-10
participants. Groups were conducted over a one year period. Each group had two leaders, a
psychiatrist, social worker and/or a counselor who was a survivor of breast cancer. Groups were
semi-unstructured and collaborative in nature, although specific content was addressed in each
session. Discussions included death and dying, familial problems, treatment concerns and
difficulties, communication with physicians and living life fully in the face of a terminal illness.

38

Researchers assessed participants with a battery of questionnaires, pre intervention and at 4
month intervals, including health locus of control, Profile of Mood States (POMS), self-esteem,
maladaptive coping responses, phobias, and level of denial.

Results indicated significant differences in overall mood disturbance, tension anxiety,
fatigue, vigor and confusion when compared to the control (Spiegel, et al., 1981). Group
members also reported a decrease in fearfulness and maladaptive coping responses. Additionally
it was noted the participants reported that the group experience decreased their feelings of
isolation and helped in “detoxifying” dying both with the discussions of death and having
experienced the severe illness and loss of other members within the group. This supportive group
intervention showed evidence of success in reducing psychological distress and increasing
relational closeness between participants. Discussing topics of death and dying in the face of
terminal illness seemed to be beneficial specifically with the attrition of members within the
group during the intervention process (Spiegel, et al., 1981).

Spiegel, and Bloom, (1983) continued research in the area of understanding the efficacy of
the same support group with a sample of 54 women with metastatic breast cancer. In this study
the supportive group intervention was utilized with 90min sessions, once per week. Participants
were randomly assigned to one of three groups; supportive group therapy, supportive group
therapy with a 5-10 minute self-hypnosis training at the end of each session with instructions for
home hypnosis, or a control group. The added hypnosis was directly utilized to help in the
reduction of pain. Specifically, participants were instructed to not fight against their pain but to
filter their pain by utilizing imagery of different sensations in the areas of the body where pain
was felt, such as an icy cold feeling or a warm tingly feeling (Spiegel & Bloom, 1983).

39

The purpose of this group comparison was to assess how the group intervention and
intervention matched with hypnosis, influenced levels of pain and stress experienced by the
participants. The sample was assessed pre intervention and at a 4 month period over the course
of one year of treatment; measures included the POMS and Pain Rating Scale. Results indicated
that participants in both treatments groups (with and without hypnosis training) reported
significantly less pain and suffering throughout the year of treatment when compared to the
control. Group members in the treatment groups did not report shorter, nor fewer incidents of
pain, however were better able to respond to the pain when it occurred (Spiegel & Bloom, 1983).
Researchers also attribute this decrease in pain and suffering with the previously found decrease
in anxiety and mood disturbance (Spiegel, et al., 1981).

Spiegel, Helena, Kraemer, Bloom and Gottheil, (1989) utilized a ten year follow up of the
sample of participants from the Spiegel and Bloom, (1983) study to assess divergence in survival
time of the women comparing the two treatment groups and the control. At the ten year follow
up only three of the participants were currently alive and death records of the remaining
participants were collected. It was found that women in the treatment groups survived an average
of 36.6 (SD 37.6) months post intervention compared to those in the control surviving only 18.9
months (SD 10.8). This finding was a significant different. Researchers made the conclusion that
their treatment intervention (both with and without hypnosis) increased survival time within
women with metastatic breast cancer (Spiegel, et al., 1981). Although this is a significant
finding, it is questionable with regards to the large standard deviations among participant means
and with the multitude of variables that are associated with each woman in the group. Differing
types of treatment, social support, optimism, coping skills and physical differences between

40

participants were not controlled. For this reason it is difficult to conclude that the intervention
was the “cause” of an increase in survival for these women.

Research in the area of efficacy of psychological support groups for women with Stage IV
breast cancer continued with an additional study focused on increasing survival time.
Cunningham, Edmonds, Jenkins, Pollack, Lockwood, and Warr, (1998) assessed 66 women
randomly assigned to either a supportive and cognitive behavioral group or a control group
consisting of cognitive behavioral at home study material. The treatment group was conducted
over the course of 35 weeks with 2 hour weekly meetings. Researchers conducted several pilot
studies utilizing the Spiegel, et al., (1981) support group with added cognitive behavioral
components before conducting the current investigation. The final group was the supportive
group previously established with 20 cognitive behavioral homework assignments given to
participants. The outcome measure for this sample was time of survival subsequent to entry into
the study. Results showed that the support group plus cognitive behavioral homework
demonstrated no significant difference in survival time when compared to the control. Although
care was taken in matching the comparison groups in severity of illness, weakness in the study
was found with alternative treatments being utilized by both the treatment and control group
(Cunningham, et al., 1998). Overall it is difficult to create a direct link between increase in
survival and support group intervention.

An additional intervention utilizing cognitive behavioral techniques is seen in an efficacy
study conducted by Edelman, Bell and Kidman (1999a). One hundred and twenty-four women
with metastatic breast cancer were recruited and randomly assigned to either a cognitive
behavioral group therapy (CBT) or a no-treatment control group. The CBT intervention

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consisted of eight weekly sessions (2hr/wk) led by two therapists with one being a licensed
psychologist. A manual was given at the start of the intervention as well as handouts and
homework assignments to be completed each week. Cognitive techniques, specifically
identifying and challenging maladaptive thoughts were introduced in the first session, with
behavior techniques such as coping, deep relaxation, problem solving and goal setting introduced
in the second session. All group meetings began with one hour of discussion focused on the
cognitive homework assignment and the second hour on discussions of topics for that day.
Topics covered included managing depression, effective communication, self-esteem, managing
anxiety, self-image, interpersonal relationships, and dealing with anger.

Efficacy of the group was measured through the use of the Profile of Mood Scale
(POMS), and the Coopersmith Self-esteem Inventory. Assessments were given prior to the
intervention, post intervention and at a 3 and 6 month follow up. Results for the treatment group
indicated a reduction in depression and total mood disturbance with improvements seen in selfesteem when compared to the no-treatment control. However, no differences were found at the
three and six month follow-up indicating short term improvements (Edelman, et al., 1999a).

Subsequent to the finding that the cognitive behavioral support group showed
improvements on mood, depression and self-esteem, Edelman, Lemon, Bell, and Kidman
(1999b) assessed the sample on survival time when compared to the control group. One hundred
and twenty-one participants from the original study (Edelman, et al., 1999a) were assessed five
years post intervention with survival calculated from the date of entry into the original study. It
was found that participants did not receive any survival benefits when compared to those in the
control sample. As with Cunningham, et al., (1998) the lack of survival benefits was attributed to

42

the physical status of the participants and the multitude of variables that can influence the disease
progression.

An additional study on women with metastatic breast cancer was conducted to assess
mood, quality of life and adjustment to cancer. Edmonds, Lockwood and Cunningham (1999)
conducted a randomized trial on 66 women diagnosed with metastatic breast cancer. These
women participated in either a weekly (2hr/wk) 8 month long term group intervention or a notreatment control. The intervention included a group of approximately 8 women and two leaders,
a clinical psychologist and a co-therapist, either a psychology doctoral student or social worker.
The group consisted of three components. First were the weekly meetings similar to Spiegel, et
al., (1981) where topics of support, problem solving, death, and emotional reactions were
discussed. Matched with these topics and weekly meetings was the second component, 20
cognitive behavioral homework assignments (to be completed at home and then discussed in the
next session) that covered topics regarding monitoring thoughts and behaviors, thought and
behavior replacement and resistance to change. The final component was a weekend coping
skills training that all participants were asked to attend. This training included relaxation and
mental imagery to help in stress reduction, positive affirmation and goal setting.

Results from this intervention were measured through the use of questionnaires including
the Profile of Mood States, Functional Living Index for Cancer, Social Support Questionnaire,
the Mental Adjustment to Cancer Scale, and the Rationality/Emotional Defensiveness Scale.
After assessment at baseline, 4mths, 8mths and 14mths, little difference was found between the
control and intervention groups. The long term group therapy did not significantly differ from
the control group on mood, quality of life, social support, or repression. The only differences that

43

were reported included greater anxious preoccupation and less helplessness over time in the
treatment group versus the control participants (Edmonds, et al., 1999). This indicates that the
intervention may have led to some anxiety but contributed resources to reduce the feeling of
helplessness. Overall the long term group intervention does not seem to create significant
psychological changes within the population of women with metastatic breast cancer.

Long term group therapy for women with metastatic breast cancer was examined in an
additional study consisting of weekly meetings for one year. Classen, et al., (2001) conducted a
randomized trial of 125 women to assess the efficacy of a supportive-expressive group
intervention verse a control group of educational material only. The intervention consisted of
weekly 90 minute sessions conducted by two leaders (i.e. psychiatrist, psychologist or social
worker). The sessions were unstructured and room for emotional expression was a main goal.
Leaders of the group introduced five themes that were open for discussion among group
members. Themes included fears of dying and death, reordering life priorities, improving support
from friends and family, self and body image, and improving communication with physicians. In
addition to the themed discussions, each session was concluded with a self-hypnosis exercise.

Assessments for this intervention were given post baseline and every four months.
Measures included the Profile of Mood States and the Impact of Event Scale. Results indicated
that the intervention led to a significant decline in trauma stress symptoms when compared to
control. Secondary analysis (excluding assessments within one year of the participant’s death)
showed significant decline in total mood disturbance and trauma stress symptoms (Classen, et
al., 2001). These results support the utilization of an unstructured, supportive expressive, long

44

term group for women with metastatic breast cancer. Specifically this study shows the
improvements that can be made in trauma symptoms.

Long term supportive-expressive group treatments are again examined in a study of 235
with women with metastatic breast cancer (Goodwin, et al., 2001). This intervention consisted of
one year of weekly 90 minute sessions with 8-12 participants in each group and two leaders (i.e.
psychiatrist, psychologist, social worker, or nurse clinician). The group was similar in the
unstructured nature to Classen, et al. (2001) with the members able to openly discuss themes
including, effects of the illness, treatment, self-image, relationships with friends and family,
coping and communication.

The main outcome measure for this group intervention was survival time, however,
psychosocial functioning was also established through self-report, pre and post intervention.
Results show no significant difference in survival time when compared to the no treatment
control group. However, a trend toward improvement of psychological symptoms and less pain
was found for the intervention group with those more distressed as baseline showing greater
psychological improvements (Goodwin, et al., 2001). As with previous research assessing
survival time, it is difficult to draw a direct link between a group intervention and increasing life
time due to the multitude of variables that are different for each participant despite the similarity
in diagnosis.

Geise-Davis, et al., (2002) again, examined the use of a supportive expressive group
treatment for women with metastatic breast cancer by assessing changes in emotion regulation.
One hundred and twenty-five women with a diagnosis of Stage IV breast cancer were randomly
assigned to either a treatment (supportive expressive) group or a control (educational materials
45

only) group. Participants in the treatment group met for weekly meetings (90min/wk) for one
year. The intervention was very similar to those that had been conducted previously (Classen, et
al., 2001; Goodwin, et al., 2001) with a two leader, semi-unstructured format. Themes that were
introduced into the sessions include social support, expressing emotions, death and dying,
reordering life priorities, friends and family, self and body image, communication with
physicians and learning self hypnosis. The main goal for the study was to examine the efficacy
of this intervention on emotion regulation including suppression of negative affect, repression,
restraint, and emotional self efficacy. Measures were taken post baseline and every four months.

Results from the utilization of a long term supportive expressive group showed a
significant decrease in primary negative affect and an increase in restraint of aggression,
inconsiderate, irresponsible and impulsive behaviors when compared to control. However,
changes in repression and emotional self-efficacy were not found. The results indicate that a
supportive expressive group for this population can increase the expression of emotion without
participants becoming hostile towards their situation (Geise-Davis, et al., 2002).

The more recent literature on group treatments specific to women with Stage IV breast
cancer reveals a follow up study from Spiegel, et al., (1989) which found an increase in survival
time as a result of a supportive expressive group treatment. Spiegel, et al., (2007) conducted an
additional study utilizing the same structure from previous works (Spiegel, et al., 1983; Spiegle,
et al., 1989; Classen, et al., 2001; Goodwin, et al., 2001; Giese-Davis, et al., 2002) in an attempt
to recreate the increase in survival time. One hundred and twenty-five women with confirmed
metastatic breast cancer were randomly assigned to the treatment or control. Subsequent to the
one year of treatment, survival time was assessed 14 years later with a mortality rate of 86%.

46

Results indicate that there was no significant difference between the treatment and control
conditions with median survival times of 30.7 months and 33.3 months respectively. These
results show an inconsistency between the Spiegel, et al., (1989) study and this replication study.
Researchers state that these findings were more closely matched to the previous examinations of
this type of supportive expressive group treatment for women with metastatic breast cancer,
whereas an increase in survival time was not found.

The final study that is specific to a Stage IV population was conducted, again, utilizing the
same supportive expressive group therapy that was manualized by Spiegel and Classen (2000)
and utilized in much of the previous research (Spiegel, et al., 1983; Spiegle, et al., 1989; Classen,
et al., 2001; Goodwin, et al., 2001; Giese-Davis, et al., 2002; Spiegel, et al., 2007). This study
was designed specifically to examine the effect that this group intervention has on pain and
suffering, frequency of pain, and degree of constant pain. One hundred and twenty-four women
with metastatic breast cancer were assessed at base line and four month intervals. Results
indicated that participants reported a significant decrease in the intensity of pain and suffereing
over time. However, there were no significant differences in frequency of the pain, nor amount
of constant pain experienced by the women. Since this group treatment includes a self-hypnosis
at the end of each session, it was found that those who were more highly hypnotizable did gain
greater benefit from the self-hypnosis than those that were not. Overall, the supportive
expressive group and use of self-hypnosis showed some evidence that this form of treatment can
help in the management of the pain that is experienced.

Conclusions

47

The literature specific to interventions for women with Stage IV or metastatic breast
cancer illustrate positive outcomes for not only psychological distress but also some physical
symptoms of pain. The supportive-expressive group structure is interwoven throughout the
literature and utilized in all but one of the groups conducted. This group format has shown
positive outcomes in decreasing psychological distress and mood disturbance and in increasing
participants’ ability to cope with pain symptoms. Cognitive behavioral techniques were also
utilized and found to have short term benefit on mood, depression and self-esteem.

Outcome measures utilized within this literature include examinations of distress and pain
but overwhelmingly there is a focus on survival time. Many of the articles concentrate on
attempting to increase the survival time of women with metastatic breast cancer through the use
of a group intervention. The research shows that this endeavor is difficult to prove and that the
multitude of variables influencing the illness and the individual, create too much variation to
make a direct link between survival and intervention.

The literature examining groups for women with metastatic breast cancer has shed some
light into how interventions influence this population and the outcomes that can come from
participation in a group setting. However, the research specific to this population is limited and
an understanding of the needs and experiences of these women is needed. Overwhelmingly the
voices of these women are underrepresented in the literature. This limitation in the research is
detrimental in the creation of interventions that meet the specified needs of this population, but
also that address the quality of life issues that these women face. As has been seen, women with
metastatic breast cancer have no hope for a cure, but hope for an increase the quality of the life
that they have left is attainable and necessary for this population.

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CHAPTER 3: METHODOLOGY

Research Design

Overview of approach. This study investigates women with diagnosed Stage IV,
metastatic breast cancer. The meanings and experiences of this group of women were examined
to gain an understanding of the needs of this population and how to successfully understand
factors that contribute to improved life quality. The narratives of these women describe their
cancer experience, how they view life, how they view death, their current quality of life, and
information regarding their quality of life needs.

The design of this research project is qualitative, guided by the phenomenological
approach. Phenomenology allows the researcher to obtain rich data in an attempt to increase
understanding of a phenomenon shared by a group, in this case the life experiences of women
living with diagnosed Stage IV breast cancer. Women with Stage IV breast cancer have great
variation in experience from one individual to another. For this reason the design of this study
needs to leave room for expression of the personal variations, while simultaneously creating a
comprehensive understanding of the individuals’ shared experiences.

Qualitative research. Qualitative research is a type of research that is utilized to gain a
deeper understanding of individuals or groups and the meanings that they attribute to a social or
humanistic problem (Creswell, 2007). The problem in question for this study is the experiences
of women living with Stage IV breast cancer. Qualitative research will capture the voices of
these women and lead to an enrichment of the literature and a call to action for the development
of best practices to address the needs of this population.

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There are several tenets of qualitative research that are well suited for this proposed study.
First, within the framework of qualitative data, the researcher is a key instrument throughout the
process (Creswell, 2007). The researcher is the collector of data and does not depend on
questionnaires or instruments to assess the experiences of the sample. In contrast, the researcher
utilizes methods of interview and direct contact with the population to create an in-person
experience of the research participant along with a continuum of gathering and interpreting the
data.

The next tenet of qualitative research that supports the research inquiries of the proposed
study is the utilization of inductive reasoning. Inductive reasoning is a “bottom-up” approach by
organizing observed data into themes and categories that generate an understanding of a specific
situation or problem (Creswell, 2007). The main goal of induction is to build a theoretical
explanation from repeated observations of a specific circumstance (Daly, 2007). The proposed
study will take this approach by utilizing in-depth interviews to create a deep understanding of
the lived experience of Stage IV breast cancer.

Qualitative research has a keen focus on the capturing of participant meanings (Creswell,
2007) which is in line with the theoretical tenets of the proposed study. The utilization of these
theoretical tenets will give the researcher background information on this population and a broad
understanding of terminal illness, before directly observing women with metastatic breast cancer.
The researcher will begin with the broad theoretical lens previously outlined and then gather data
from a specific sample to enhance the knowledge and understanding of the experience of stage
IV breast cancer. Qualitative research values the process of capturing the participant meanings of
a certain situation (Creswell, 2007; Daly, 2007). This principle alone supports the use of this

50

form of research for the proposed study. The main goal of this study is to understand the
experiences and meanings attributed to living with terminal breast cancer. Qualitative research is
needed to depict the voices of women with Stage IV cancer and to create understand of the needs
and struggles of this population.

Phenomenology. There are several different techniques that can be utilized in qualitative
research. Phenomenology is the approach that is utilized in this study. The purpose of
phenomenology is to investigate the subjective lived experiences of a group related to a
particular phenomenon and how they make meaning within their subjective world contexts
(Daly, 2007). This approach will be applied to evolve a collective experience through the
emergence of characteristics and themes shared by the participants examined. Phenomenology is
rooted in the philosophy of how objects, actions and events appear in the consciousness of a
subject (Daly). Alfred Schutz (1971) took this approach from philosophy to social science by
identifying a two-step process to gain a “sympathetic understanding” of everyday life. First,
individuals interpret their world within their specific context, biography and sphere of relevance.
Second, social scientists observe and record the ways in which these individuals do this and in
the process, interpret their own meanings to the collective, subjective, and observed meanings of
the individuals (Daly). Intersubjectivity is a key concept within phenomenology.
Intersubjectivity is the idea that in every reality there are subjective perceptions, however, there
are also common elements and shared meanings within that reality. The current study applies this
concept by observing and recording multiple subjective lived experiences, interpreting them
through a research lens, and creating meaning in the shared experience of the particular
phenomenon.

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The phenomenology approach is ideal in the examination of the lived experience of Stage
IV breast cancer. Through the exploration of the research questions and the use of in-depth
interviews, the current study will produce an understanding of the experience of Stage IV breast
cancer and how the women within the study experience their lives after this diagnosis and how
they create life quality in spite of their situation. Additionally, this research will be utilized to
inform new interventions for this population, educate those who are currently conducting
psychosocial interventions to better meet the specific needs within the experience of Stage IV
breast cancer, and educate those who work closely with this population (oncologists, nurses,
marriage and family therapists, social workers, and the like).

Researcher bias. One the most valued principles in the phenomenology approach is
“bracketing” of reality (Daly, 2007). Bracketing refers to the suspension of any judgment of the
reality being examined in order to experience the reality as the subject experiences it. The
researcher must be aware of any bias/judgments that they bring to the observations and set them
aside, so that they do not influence the data collection. Therefore, it is of paramount importance
that all biases are clearly expressed and all efforts are made to achieve unbiased observations.

The researcher of the proposed study holds two main biases in regards to the data
collected. First, due to the undertaking of reviews of previous research, it is the belief of this
researcher that women with Stage IV breast cancer have a different experience than those with
other stages of breast cancer. Having examined much of the psychosocial intervention research
in this area the researcher holds the judgment that due to the severity of illness, incurable nature
of the disease, and lack of interventional resources specific to this population, that these women
should be placed in a different category than those with other forms of breast cancer. The

52

researcher was diligent in compartmentalizing this belief when observing women with Stage IV
breast cancer. To address this judgment, the researcher made every effort to take a neutral stance
with this population, as opposed to the researcher presenting this subjective opinion to the
participants. Prior to each individual interview, the researcher took time to reflect on this bias as
an effort to bracket and maintain a neutral stance.

Additionally, it is the belief of this researcher that group interventions are beneficial for
this population. Having examined much of the efficacy research in the area of psychosocial
interventions for women with breast cancer and having read the multitude of benefits that have
been found, the researcher had to be diligent in compartmentalizing this belief when observing
women with Stage IV breast cancer. There is potential that some, if not all, of the women within
this study may hold different beliefs regarding the benefit of group interventions. Some of the
women may have had negative experience in the past and may share these negative thoughts
with the researcher. To address this bias the researcher made every effort to take a neutral stance
on group interventions and focus more on gathering the experiences, both positive and negative
of the participants within the study. Prior to each interview the researcher spent time bracketing
this bias in an effort to not impose this perception onto the participant. Dialogues with the chair
of the dissertation committee were continuous to check in with this bias and every effort was
made to avoid bringing this into the phenomenology approach.

Procedures

The study included individual interviews with women with a diagnosis of Stage IV breast
cancer. The description of goals is as follows:

53

To explore the subjective experiences of women with a diagnosis of Stage IV breast cancer
through 10 individual interviews.

1. To understand the metastatic breast cancer experience from the time of diagnosis to the
time of the interview.
2. To gain an understanding of needs specific to this population of women including
physical, psychological, spiritual, and social.
3. To gain understanding of how social supports influence their personal experience of
cancer.
4. To gain an understanding of the participants’ thoughts regarding life and death when
facing their own mortality.
5. To gain understanding of the quality of life factors in this group of women and the
contextual and support factors that increase quality of life or serve as barriers to quality
of life.

Sampling procedures.

Determining sampling sites. The participants for this study were recruited from multiple
sites. The sample of women with a diagnosis of Stage IV, metastatic breast cancer, were found
within the United States, and recruited through hospital settings, oncology offices, and a blog site
specific to this population.

Recruitment. The recruitment process for this study began with contacting three sources
located in the South Eastern region of the United States. These connections were as follows:

54

the President of Georgia Center for Oncology Research and Education (CORE), the head
oncologist for Atlanta Cancer Care and principle investigator for the Atlanta Regional
Community Clinical Oncology Program, and the Cancer Care Center of Tuscaloosa, AL.
The first contact with the sources consisted of an email sent to each individual introducing
the researcher as the primary investigator and introducing the current research. A summary of
the proposed study and a section specifically outlining the population of inquiry were included
within the emails. Following the emails, phone calls to each of the contacts were made by the
researcher to form a more personal connection with the recruitment resources and to answer any
questions from each contact. The researcher then scheduled a face to face meeting with each
contact to further discuss the project and methods for recruitment.

Once an agreement was made between the researcher and contact person, informational
flyers were distributed to each sampling site outlining the study and inclusion criteria (see
Appendix B). The flyer gave clear direction to anyone interested in participation related to how
to contact the researcher directly by phone or through email. Included in the flyer was a
description of the study, inclusion criteria, and the description of an incentive of $25. The flyers
were distributed by the contact person to those who met the inclusion criteria and posted in
offices where the population frequented (e.g. oncology offices, bulletin boards in hospital).

Additional recruitment methods were taken through the use of internet resources and one
blog specific to women with metastatic breast cancer called www.inspire.com. This site offered
blogs specific to many different illnesses and was a resource that this participant utilized. The
researcher went onto this site and created an account. A post was then made onto the blog giving
women the same information that is on the flyer distributed to physical recruitment sites. The

55

women were, again, asked to contact the researcher by phone or through email if they were
interested or had any questions.

When participants contacted the researcher by email or phone, they were then assessed
based on inclusion and exclusion criteria in determining whether or not the person was a
potential candidate. If inclusion criteria were met, a verbal consent to participant was gained and
an informed consent was sent through the participant’s email. The informed consent included
information regarding the expectations of the participant and the research being conducted. It
also included instructions to sign the form and how to send it back to the researcher via email or
U.S. mail (see Appendix C). Once the informed consent was signed and sent back to the
researcher, availability of the participant was assessed and either a face to face meeting or phone
interview was scheduled depending on the location and transportation limits of the participant.
Inclusion and exclusion criteria. Inclusion and exclusion criteria for the proposed study
were utilized so that all participants accurately represented the population of interest. Inclusion
criteria included that the participant must be a) a woman b) have a current primary diagnosis of
Stage IV breast cancer. A breast cancer diagnosis can either begin with a Stage IV diagnosis or
develop into a Stage IV diagnosis over time. All women included had a Stage IV diagnosis.

Women were excluded from participation within the study if, a) they did not possess a
Stage IV diagnosis, or b) English was not their primary language. Due to the diverse population
within the South East, it is important to make the English language distinction as there may be
potential participants that utilize English as their second language.

Sample description. The current study consists of 10 participants located across the
United States. Five participants were clustered within the South East of the US (Alabama and
56

Georgia). The remaining 5 participants were sampled from a blog website and were located on
both the east and west coasts of the country (see Table 3.1). Participant ages ranged from 46-80
with a mean age of 58. At the time of the interview the participants had lived with Stage IV
breast cancer between 1.5 and 14 years. Four participants had never had a previous diagnosis of
breast cancer, while the remaining 6 had different breast cancer experiences previously, but
never a previous Stage IV diagnosis. Nine of the 10 participants were Caucasian and one labeled
herself as Italian and Japanese. Three of the participants had no connection with a family of
choice (e.g. single and no children). Participants had varying spiritual affiliations including
Methodist, Protestant, Episcopalian, Christian, Catholic and Buddhist. Three of the participants
did not have any spiritual affiliation. Regarding employment status, two of the participants were
working full time, three were working part time, two were retired, and three reported being
unemployed (see Table 3.1).

57

Table 3.1: Demographic Information
#

Age

Race/Ethni
city

Date of
Stage IV
Diagnosis

Previous
Cancer
Diagnosis
(Type/Date)
None

Immediate Family
Members

Age of
Family
Members

Employment
Type

Employment
Status

Spiritual
Affiliation

Highest Level
of Education

1

80

Caucasian

Dec. 07,
2012

Husband
Son
Son
Daughter
Granddaughter
Husband
Daughter
Son
Husband
Daughter
Daughter
None

Deceased
58
55
51
20
72
34
30
57
25
28

Real-estate
Broker

Retired

Methodist

Associates
Degree

2

66

Caucasian

2011

Stage II/2001

Organ player for
Church
Bank Teller
Substitute
Teacher

Unemployed

Protestant

Bachelors
Degree

3

55

Caucasian

November,
2011

Stage I/2007

Employed Full
Time

Catholic

Masters
Degree

4

47

Caucasian

None

5

55

Caucasian

October,
2003
June 15th,
2012

Dog Walker

Employed Parttime
Unemployed

None

Some Grad
School
Bachelors
Degree

Stage
IIIC/2008

None

6

50

Caucasian

2000

7

59

Caucasian

January 1,
2009

1988 and 3
reoccurrences
of varying
stages.
None

Husband
Son
Daughter
Daughter
Son

54
26
23
20
31

Employed Full
Time

None

Associate
Degree

Store-All
Storage
Manager
Lunch Worker at
High School

Retired

None

2 years of
College

8

46

Italian and
Japanese

January,
2010

Stage
IIB/IIIC/ Jan.
2007

9

69

Caucasian

February
15th, 2011

52
21
18
16
68
34
32

10

50

Caucasian

May, 2011

Mentioned
previous
diagnosis but
Stage not
specified (Not
IV)
None

Husband
Daughter
Daughter
Daughter
Husband
Son
Son

Employed PartTime

Catholic

High School

Teacher

Employed PartTime

Episcopalian

Post Graduate

Niece (Lives with)
Niece (Lives with)

19
17

Advertising
Sales

Unemployed

Christian

Some College

58

Secretary at
University of
Washington
Teacher
Assistant

Buddhist

Data collection.
Individual semi-structured interviews. The study design includes 10 individual
interviews with women with a Stage IV breast cancer diagnosis. Individual interviews are widely
utilized as a way to gain information in qualitative research. Specifically, with the approach of
phenomenology, interviews are conducted as a way to elicit detailed descriptions of a certain
reality (Daly, 2007). The ways in which an interview is conducted also depends on the
methodology that is being used in the research. In a phenomenological approach, it is essential to
gain a detailed description of the shared experience (Daly 2007). To achieve this, a semi
structured interview was utilized. “In many qualitative interviews, the researcher begins with a
set of question that have arisen from a reading of the literature or an understanding of preexisting
theory,” (Daly, 2007, p. 145). Based upon the theoretical framework described (Samson & Siam,
2008; Wright, 2003), a collection of 22 interview questions were created to address all aspects of
the experience of Stage IV breast cancer. An interview guide was created that included an
introductory statement and the interview questions (see Appendix E). As the interviews
progressed some questions were asked differently, probing questions were added, and some
questions were dropped due their repetitive nature.

Once contact had been made between the researcher and potential participant, and it was
established that the woman met inclusion criteria, and the informed consent form had been
signed, the interview took place. Depending on the location and physical health of the participant
and the location of the researcher, it was decided whether a face to face interview was possible,
or whether a phone interview was preferred. Only 2 of the interviews were conducted face to
face. These interviews were conducted in a conference room located within the Cancer Research
Center of Atlanta. The additional 8 interviews were completed via phone. The interview began
59

by the participant answering several demographic questions (see Appendix D). After
demographics were completed the interview questions began. Once the interview was completed
the researcher mailed the participant a $25 Visa Gift Card as a token of appreciation for their
participation.

Data preparation. All interviews were audio recorded using a hand held recorder either
placed on the table between the two individuals or placed near the speaker on the telephone
utilized by the researcher. Once the interview was recorded, the audio WAV file was transferred
onto the researcher’s personal password protected laptop. Each interview was saved under a
randomly assigned participant number (1-10). The interviews consisted of approximately 14
hours of audio recorded data. The researcher then hired an independent transcriptionist to
transcribe the audio files into text files. The transcriptionist had no identifying information
attached to the files, other than the randomly assigned numbers. The transcriptionist was also
asked to sign a confidentiality statement to ensure that all data was secure (see Appendix F).

Data analysis. The data analysis was conducted in adherence to the procedures of the
phenomenology approach. Analysis included the use of the seven step process outlined by
Colaizzi (1978). The first step in the analysis was to read the transcribed participant narratives in
order to acquire a feeling for the individual experiences and to understand them fully. The
second step is to extract any significant statements by identifying key words and sentences that
related to the phenomena that was being examined. The third step was a process of identifying
meanings to these significant statements within the narrative, thus creating a set of meaning
units. Fourth the process was repeated for all participant narratives and recurrent meaning units
were clustered to create themes within the data. These were validated by returning to the data to

60

check interpretation. The researcher conducted two detailed searches for meaning units prior to
clustering into themes. The fifth step involved the integration of the themes into a way that
resulted in a rich description of the phenomena. Sixth, the themes were placed into a structure
that offers an explanation of the experience. The final step involved the researcher returning to
the participants to conduct further interviews in order to cross check interpretation and to elicit
their opinion on the analysis. The current study utilized the first 6 steps of these procedures in
order to create an understanding of the experience of Stage IV breast cancer in regards to quality
of life and needs. The seventh step involves bringing the data back to the participants for
feedback, this was not conducted within this study.
Role of the Researcher

Throughout the process of this proposed research study, I (the researcher) was central to
both the data collection and data analysis. For this reason I aimed to continuously reflect on my
biases, background, and experiences in an effort to keep them separate from the data analysis
process. Through bracketing, the writing of memos, constant reflection and discussions with the
head of my committee, becoming familiar with the culture prior to engagement, gaining a thick
description of the data and having a deep familiarity with previous research on the population, I
made every attempt in understanding the lived experience of women with Stage IV breast cancer.

Trustworthiness

The trustworthiness of research can be broken down into four distinct criteria (Miles &
Huberman, 1994); confirmability, dependability, credibility, and transferability.

61

Confirmability. Confirmability is the process of achieving neutrality of the findings and
reducing influences of biases. Specifically, I utilized reflexive memo writing as a form of
commentary throughout the proposed study specific to the biases and personal emotions I
brought to the project. Memo writing is the process of writing down thoughts, hypotheses and
observations about the relationships among the data. In the current study, memos are used as a
bracketing technique to create constant feedback between the researcher and the data.
Specifically there are different forms of memos that can be written within this process (Strauss,
1987); textual memos: how one thinks about the data or codes that are emerging; observational
memos: memos focused on the contextual observations within the research;
conceptual/theoretical memos: thoughts regarding the creation and interrelationships of the
categories; operational memos: practical thoughts and reminders such as questions to ask or
sampling strategies; reflexive memos: observations of the researcher and any personal thoughts
or feelings that emerge throughout the process. This grouping of memos was utilized through the
process of data collection and analysis. These memos were utilized as an additional resource in
the researcher’s process of bracketing.

By utilizing detailed reflexive memos to conduct bracketing, I made a constant, conscious
effort to understand where biases lie and how they could influence the data. Additionally, the
memos gave a venue to express personal emotions regarding the data being collected and
analyzed so that these emotions could be utilized productively to help the participant’s voices be
heard as opposed to projecting my own emotional needs and reactions onto the data.

Dependability. Dependability in qualitative research suggests that the process of the
research is consistent and stable over time. To reach dependability, methodology must be clearly

62

described for the possible duplication of the research (Morrow, 2005). Dependability was
addressed by the researcher through detailed description of the methods used, how meaning unit
and themes arose, through memo writing and the use of reflective commentary with the head of
the research committee.

Credibility. Credibility of research refers to the idea that the data observed represents the
authentic picture of reality. This can be established utilizing several differing techniques. The
current study utilized established phenomenological research methods, gaining a cultural
understanding of the population observed prior to data collections, examining previous research
findings, and collecting a thick description of the phenomena (Shenton, 2004). First, the
researcher utilized established phenomenological research methods highlighted by Colaizzi
(1978). Meaning units and themes were established through two detailed examinations of the
data (see Table 3.3). Prior to data collection I examined a breadth of previously published
literature on breast cancer and literature specific to Stage IV. Additionally, I read two non-fiction
books on the experience of cancer (It’s Not About the Hair: And Other Certainties of Life and
Cancer by Debra Jarvis and Any Day with Hair is a Good Hair Day: How to get Through Cancer
and Get On With Your Life by Michelle Rapkin) and had many conversations with individuals
who worked directly with patients of breast cancer, including oncologists, nurses and those who
work in the field of cancer research in an attempt to create an understanding of the population
prior to questioning participants on their lived experience. In an additional attempt to reach
credibility I elicited the participation of 10 different women from across the United States in
order to gain a wide range of experience and depth of understanding. Each woman has had the
disease for a different length of time, has differing personal circumstances and has a unique

63

subjective experience. By embracing the differences among the sample, the researcher was able
to gain an authentic description of the reality of living with Stage IV breast cancer.

Table 3.3: Meaning Units and Themes
Meaning Units: Level 1
Family

Meaning Units: Level 2
Supporting the Woman with
Stage IV BC

Themes

Relationships

Family Reactions to the
Disease

Finances

Leaving Work

Financial Struggle

Insurance Struggles

Cancer Education

Information from Doctors

Need for Education

Relying on Self Research

Past Experience with Illness

Past Cancer Diagnosis in Self
Past Experience with
Terminal Illness in
Family/Friends

Personal Characteristics

Age

Community Support

Close Friends
Having a Community
(church, group involvement,
etc.)

Stage IV Specific
Experiences

Mortality

64

Relationships

Table 3.3 (cont’d)
Reality of Illness

Physical Struggles

Side Effects from Treatments
Fear of Future Body
Deterioration

Emotional Reactions

Making Meaning

Body Deterioration

Attitudes Towards Self
Attitudes Towards Death

Making Meaning

Psychological Reactions

Spirituality

Religion and Prayer

Support Groups/Therapies

Quality of Life Statements

Faith

Need for Connection

Need for Connection to
Others with Stage IV

Creating Quality in Life

Need for Information,
Education, and Advocacy

Transferability. Transferability refers to the ability to apply the observed research to
others in similar context. Within qualitative research, data collected cannot be generalized to
other populations or other settings, however, transferability can be reached through the inclusion
of detailed information about the study being conducted (Morrow, 2005). The current study
provides documentation of participants, research methods, the investigator, and the
contextualization of the study. Additionally, the current study relies heavily on the voices of the

65

participants, through quotation, to enhance transferability. Although the current study will not
attempt to generalize results to all women with a Stage IV diagnosis of breast cancer, it will
create a description of the common themes and categories that arise from the participant
experiences. This can then be applied to those in a similar situation in an attempt to bring more
specified resources to the population.

Considerations of Human Subject Issues

The current study adheres to all procedures necessary in reducing the risk to the research
participants. Prior to the initiation of the research, approval from the Institutional Review Board
of Michigan State University (IRB) was gained. The application for the IRB thoroughly outlined
all procedures of the study and addressed all risks to human subjects.

66

CHAPTER 4: RESULTS

The purpose of this study was to examine the lived experiences of 10 women with Stage
IV breast cancer. The purpose of this chapter is to present the themes the women described
related to living with a Stage IV breast cancer diagnosis. I set out to answer the following
research questions: “What are the lived experiences of women with Stage IV breast cancer, what
helps them to live with this diagnosis, and what contributes to and what impedes, their optimal
quality of life? In the process of data analysis, eleven first level meaning units emerged
following the first review of the transcribed interviews. Additionally, 20 second level meaning
units were developed from the original 11 during the second detailed review of the transcribed
interviews. Utilizing the voices of this population, these themes are described. Finally, an
explanation of the lived experience of Stage IV breast cancer in the context of creating optimal
quality of life is presented.

I set out to answer the research questions and was guided in the phenomenological
analysis by the theoretical framework of Samson and Siam’s Comprehensive Task Model
(2008). Several major themes arose and these included personal characteristics, reaction and
acceptance of diagnosis, reality of the disease, body deterioration, mortality, needs, relationships,
faith, life purpose, financial struggles, making meaning, and quality of life. These themes
combine to describe the specific experience of Stage IV breast cancer. Themes are presented and
organized following the theoretical model utilized within this study.

Personal History and Social Context

67

Samson and Siam (2008) explain that personal history and social context include
background and personal characteristics, event-related factors and physical and socio-cultural
environment. These aspects of individuality influence how a person views their illness. Within
the current sample, each participant brought a unique perspective that influenced the overall
lived experience of Stage IV breast cancer. The individual narratives were created through an
individualized lens, where differences among individuals in the sample shaped how the women
experienced their cancer. Among the descriptions, age, ethnicity, length of disease presence,
previous cancer diagnosis, family make up, employment status and type, spiritual affiliation,
level of education and location, and past experience with a severe illness in a family member,
many differences were observed. In order to capture the lived experience of each woman, I
provide next a thick description of each participant including a description of characteristics
which stood out for the women as having the greatest influence on how they viewed their cancer
experience. The voices of the women are presented regarding these three characteristics to
further explain each individual narrative and how Stage IV breast cancer was viewed by each.

Participant 1. Participant 1 is the eldest of the participants at 80 years old. She is a
Caucasian women, from Northport, AL, who has had a diagnosis of Stage IV breast cancer for
approximately two years. She has had no previous cancer diagnosis, prior to Stage IV. Her
husband had passed away two years prior of cancer and all of her children were adults with their
own families. Participant 1 is close to her three children and their families. She holds an
associate’s degree and is a retired real-estate broker. She retired due to her age and not her
disease. Participant 1 is religious and labels herself as Methodist. She has a strong community
linked to her church. Overall she has a positive attitude on life which may also be related to her
age. The age of this participant led to many differences in her personal circumstances with
68

cancer. At the age of 80, she had a unique view of life which influenced how she viewed her
cancer:
“No, I was not devastated [regarding having Stage IV breast cancer], because I
am quite aware that we are temporary here on earth and we are all going to die.
At my age I have had such a full life.”
“I don’t sit around and dwell on the fact that I have cancer. It has not devoured
my life. It has devoured a lot of my activities, but at age 80, I guess you start
to slow down some anyway, I hadn’t started, but I guess I have now.”
Participant 1 could look back and see the fullness in her life. She sees ways in which her Stage
IV cancer slows her down physically but did not seem to be able to separate those ailments from
her age and physical body slowing down naturally. This gave her a perspective where the cancer
could not be blamed for all her physical struggles. Due to her age, she also had the privilege of
working to retirement and choosing to retire. She was also able to see her children grow into
adults and to have the experience of being a grandmother. Combine these characteristics of her
life gave her the response of not being devastated that she was living with Stage IV breast
cancer.

The past experiences that she had had with her husband also created uniqueness in her
own experience with cancer. She both had the comfort in having resources that she had utilized
previously with her husband, but also had the difficulty of her children living with another parent
with cancer and facing her possible death:
“I was dealing with a husband who was not well at all and then when they
finally diagnosed me with cancer, he had deceased…to have been already very
much involved in the cancer center with my husband and they were just
wonderful to him and so, I went immediately to them.”

69

“There was not any doubt in my mind that that is where I would go for the
treatment. It was very difficult to tell my family, because we had just gone
through all of this with him.”
“But, like I said, they already had been in the throes of all of this or it might
have been much harder for them. And of course, it was hard because they had
just lost their father. So I guess one of the pluses is that he did not have to go
through this with me so I consider that one of the blessings and there have been
many, many, many blessings and the children are the greatest ones of course.”
Participant 1 describes having a long life and how much of her slowing down is not only due to
her cancer but her age. Additionally, she describes her past experience with her husband as both
positively influencing her own experience through feeling more prepared for how to approach
her cancer treatment, but also a negative influence on her family who had just lost their father
and had lived through his cancer. These factors created a lens that enabled Participant 1 to
experience her Stage IV diagnosis with a sense of preparedness regarding her own mortality and
how she would react and adapt to her cancer diagnosis.
Participant 2. Participant 2 is a 66 year old, Caucasian woman from Benton City,
Washington. She has a husband and two adult children. She has had one previous experience
with breast cancer, in 2001 where she was diagnosed with Stage II. She has held a Stage IV
diagnosis for 3 years. Participant 2 was extremely well read. She spent a great deal of her time
researching alternative medicines for her treatments as she held strong feelings that Western
medicine was not always the best choice for treatment. She had witnessed a lot of illness and
death as a result of her job as an organ player at her church (she played many funeral services as
well as church services). Participant 2 stated that she was Protestant and strong in her faith.
Additionally, she had a neighbor who had dealt with severe illness, and she had observed
multiple illnesses in her family. These experiences helped shape her views of Stage IV breast
cancer:
70

“The gal across the street had breast cancer about the same time I did, but it
was a small cute little street you meet at the mailbox, and come to find out we
found out, we had breast cancer at the same time. Her husband, the minute she
came home with the diagnosis said, ‘I can’t handle this,’ and left her. So that
was my first and in my face experience because I was just out of treatment
myself so I hadn’t paid that much attention to other things.”
“…so I hear stories of all sorts of things, of all sort of things that have
happened and I have seen a great deal of separation and so the um, um, that
was one thing that I was committed to not doing myself and my family was not
like that, grandma with stroke, grandpa with dementia, we were not a perfectly
healthy family, but we still get by. Uncles and aunts that do things that gave up
their life which meant giving up some of our lives. So that’s the core of me
but, because of my semiprofessional job I have seen a lot of, for whatever
reason, people are fractured and splintered because of cancer.”
Participant 2 had observed a lot of hurt and heartache around having cancer and how it affects
individuals and those close to them. She had also experienced seeing strong support when
members of her family were ill. Based on these experiences she knew the importance of having
her family support her, but was understanding that not all people react with support.

Participant 2 also alluded to her life stage in regards to how she views her cancer
experience:
“…my kids are grown and I am seeing my grandkids are being raised well and
healthy and all that stuff. I know that I will see them in heaven…”
Due to her age, she had been able to experience her children growing up and them having kids of
their own. She was a grandmother and knew that her grandchildren are being raised well. The
statement “I know I will see them in heaven,” gives almost a sense of satisfaction with being able
to have seen this much of their lives already.

Her own personal past experience with breast cancer also influenced how she accepted
her metastatic diagnosis and how her family responded.

71

“I forgot to tell my husband. I mean I forgot until dinner time. So, I had it at
nine in the morning, but then I was like oh what about this bill to pay, and how
his day was. Then sitting down to eat, I was like oh by the way, cancer
metastasis to my body and his fork went down. He cried and um. But, I said
there is stuff out there like there was before. So, it was like um, how I felt was,
I knew they would feel this way because they did this the first time. They
adjusted; they didn’t stop their lives, because they are all very busy. That’s
how I raised them. I needed them to have their life.”
Participant 2, having experienced breast cancer previously, describes a preparedness in herself
and in her family. This preparedness influenced how she viewed her cancer.
Participant 3. Participant 3 is a 55 year old, Caucasian woman living in Atlanta, GA.
She has a husband and two daughters in their twenties. She had one previous breast cancer
diagnosis of Stage I in 2007. Participant 3 has been living with her current diagnosis for 2.5
years. She was working full time as a substitute teacher and held a Master’s degree. Participant 3
labels herself Catholic but does not feel very close to that religion and has more of a personal
spiritual connection than a connection to religion. She is also a very active woman and runs long
distance and was recently training for a marathon.
Participant 3 struggled with her current diagnosis. Her first experience with breast cancer
in 2007 made it more difficult to accept her current diagnosis of Stage IV. She also had seen
others in her life go through breast cancer (other Stages) and reach a cure, further creating
difficulty in her ability to understand her situation:
“I was diagnosed with stage 1 in 2007 and I knew quite a few people who had
breast cancer including my mom so I just felt, okay I am the one out of eight I
will deal with stage one and then I will move on with my life and I will be
finished, you know I went through all of the process. I had the lump removed, I
had chemo and radiation, took the pill, Aremadex and I thought that was it. I
really did. I really didn’t even know what stage 4 meant. I went on with my life
and then in 2010 thanksgiving weekend I finished my first marathon and two
days later I went to get the result of a tiny little lump and then where they were
spreading across my sternum. I went to get the diagnosis two days after. So I
72

was like YEAH I finished my first marathon, I feel great and I went in two
days later and she was like you have metastatic breast cancer. Um, and I didn’t
know what that meant.”
“I mean my mom was stage one and she has been cancer free for 12 years and
mother in law has had it twice and she is cancer free. So, no one could
understand stage four.”
Having a curable diagnosis of breast cancer and having others around her become cancer
free left her feeling confused and alone when she was diagnosed with Stage IV. Having been
cured, feeling healthy and then receiving this incurable diagnosis was shocking. Her past
experience with a curable cancer did not leave her with anything to compare Stage IV to. When
the cancer was not curable, she did not know how to proceed.
Participant 3 also had a past experience in taking care of her father with Alzheimer’s.
This difficult experience taught her ways to look at her own Stage IV breast cancer:
“An experience that happened to me was in 2007 when I was diagnosed with
this the first time. I was also taking care of my dad who had Alzheimer’s and
um, it was really, a teaching experience, taking care of my dad who was living
by himself but I would go see him a few nights a week and dealing with the
breast cancer…my dad moved in with me and it was just a violent situation
and it was heartbreaking. So, I had to put him in a nursing home and my dad
was very strong physically and he could break out of a room. Mentally he was
completely gone. He was on no medicine though. But, when he turned violent
it was dangerous. But, anyway to make a long story short. I felt out of control
and he was on an overdose of drugs. It was horrific and I was devastated.
Devastated that I could not control that situation. I felt like he gave up and he
passed away. That was the most difficult time until I came onto stage four
breast cancers. But, what I realized, I couldn’t be in control of the situation.
But, my mom said you did all you could and the best you could. I went to
counseling for that and I felt like that’s how I am going to handle this breast
cancer stage four. There are things I can’t control obviously but I am going to
do the best I can.”
Having this past experience with her father gave her the wisdom to focus on the things that she
could control and not those things that she had no power over. This past experience with a

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terminal illness was utilized in how she viewed her own cancer and how she will continue to live
with her diagnosis.
Participant 3 also had experienced her brother-in-law’s death from brain cancer. This
experience led her to thoughts of her own mortality and how she may be seen when she is closer
to the end of life:
“My brother in law at 46 died of brain cancer and he had two young children
and I will never forget his wife telling me that as he was dying they were
saying don’t go daddy. I thought, I mean, I remember it was very difficult for
him, he was sick. I don’t want to go through all that and I don’t want my
family to. That was what I was thinking of, you know down the road, I mean
should I think about ending it?”
Experiencing the death of a family member due to cancer gave her information on how to
prepare herself and her family for her inevitable death. Additionally, she was able to see what
could happen if she did not prepare herself and her family for her inevitable mortality.
Participant 4. Participant 4 is a 47 year old, Caucasian women living in Sherman,
Connecticut. She is a single woman with few family connections. She has never been married
and does not have any children. She has no previous breast cancer diagnosis, but has been living
with Stage IV for 11 years. She is currently employed part time as a dog walker and has some
graduate school experience. Participant 4 previously held a position as a free-lance photographer
and artist, but is not able to continue that work due to physical limitations and financial struggles.
She does not have a spiritual affiliation.
Although Participant 4 has not had a previous cancer diagnosis personally, she has had
past experiences with cancer and death in her family of origin which has informed her decisions
regarding her own cancer diagnosis.

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“My mother died of cancer when I was twenty four. My step sister died of
cancer in 2000. Those two experiences informed me somewhat. I have had my
own ideas about if it ever happened to me. What I may or may not do about it
and seeing a lot of people and what decisions and I have done a lot of
volunteer work over the last few years with patients and have lost a lot of
people. Being more clarified about what I will and won’t do.”
Having close personal experiences with family members who have died of cancer, and
experience with volunteer work has helped to inform this participant about the decisions that she
would make regarding her own cancer experience.
“Having gone through it with the family already. Having lost friends already.
You know the makeup of my own personality and realizing that life is short.
Bad things happen sometimes and that’s the way it is. I have had exposure to it
and that probably freaked me out a little bit that I watched the process. You
know how horrible it gets toward the end. I try not to think about that and it’s
not something completely new. I didn’t have the kind of life; you know I have
seen people who have always had a life that was really stable and planned out,
then when something like this pops up it throws some people. But, I didn’t
have that life anyway. I think I am a lot more use to change and instability. So
I could deal with it a little bit easier.”
Participant 4 saw how bad cancer can be at the end of life and this created fear in her, but also a
reality of the inevitability of her situation. She reflects on the instability that illness has had on
her past and regards this as something that has prepared her for the instability of her Stage IV
diagnosis. She reports having an easier time adapting to the changes in her life from her breast
cancer, due to the fact that she has had a great deal of past instability from others who have had
cancer.
Participant 5. Participant 5 is a 55 year old, Caucasian woman. She is single, with no
children, living in Seattle, Washington. She had one previous diagnosis of breast cancer in 2008,
Stage IIIC. She has lived with her current diagnosis for 1.5 years. All of her closest family and
her best friend/romantic partner had previously passed away. She holds a Bachelor’s degree, but
was currently unemployed. She previously worked as a secretary at the University of
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Washington. Participant 5 labeled herself as Buddhist but describes herself as more spiritual and
not practicing any specific practices of Buddhism.
Having experienced so much loss and death in her past has left her with a lack of familial
support and a gratitude for the friend and community support that she has:
“In my case, my father died in 1999. My mother and brother died in 2004.
They were all my immediate family so they all died between the first, and
second time [I was diagnosed with breast cancer], well there was the love of
my life, and also my best friend, and he unfortunately had a heart attack and
died. Some other things happened so I haven’t had any immediate support
from family because they don’t exist. In some ways it would be really nice to
have a partner, I treasured my support from my friends and my community.”
The past experiences with death in her family, in combination with her past experience with
breast cancer, gave her a sense of gratitude, despite her current severe diagnosis. Although still
young at 55, these past experiences gave her a perspective where instead of being angry at her
situation, she has knowledge that there are much worse situations to be in.
“I am a lot more, humbled, to be here, to be alive. Looking around here,
comparing myself to so many situations. I do, some people say, I feel
incredibly grateful. Getting this diagnosis, I am not a twenty nine year old
mother of two kids. It’s still there are a lot of things I want to and need to
accomplish before I die. I still think there are things I can do. Mostly on my
own. Better my health, better my life systems. I still don’t have, certainly could
do a lot better embracing my mortality and there are times, especially now, I
feel a lot of social isolation because of what I have been through and in this
last month in terms of meds and pain, um, you know, I could still be, I would
really like a vacation from all of this, I can still be really overwhelmed. But I
have a better grip on it than the first time around. I guess, maybe people
become a little bit better about, not the best phrase, but learning to expect the
unexpected.”
Participant 5 expresses feelings of isolation from the losses in her life, but is able to take her past
and use the knowledge she has gained about life to help her manage her current life situation.

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Participant 6. Participant 6 is a 50 year old, Caucasian women living in Chesapeake,
Virginia. She is married and a mother of three children in their twenties. She has had three
reoccurrences of breast cancer over a period of 12 years, leading to her final diagnosis of Stage
IV. She has lived with Stage IV for 13 years. This lengthy experience with breast cancer has
given this participant an extremely unique perspective on her Stage IV diagnosis. Breast cancer
has been a part of her and her family’s lives for 15 years.
“I was diagnosed in 1998 and I have had three occurrences. It has been tough
and it seems like it always comes at the same time, in the same month, which
this month I was actually diagnosed on St. Patrick’s Day at 1:10 in the
afternoon. I still remember what I was wearing, where I was sitting and what I
was eating at the time. It has been 15 years this year. I don’t know. I do think
that it probably made me a better person. I think sometimes life just happens
really, really quickly and I think that you take things for granted and I don’t
really do that anymore.”
Participant 6 has learned to not take things for granted and has experienced how fast life can go
by. Experiencing so many reoccurrences, she seemed to have a level of acceptance that breast
cancer was always going to be in her life, even prior to the Stage IV diagnosis.
Participant 6 previously shared the cancer experience with her husband who had throat
cancer during one of her previous bouts with breast cancer. This led to a bond and support from
her husband, as they were able to go through cancer together.
“I just feel like I need to take care of myself and whatever it takes to do, that’s
what I’m going to do. My husband is right there with me. My husband is also
a cancer survivor as well. My husband had throat cancer and he was a
nonsmoker. When I was going through one of my treatments, my husband was
going through surgery and that was a humdinger. We both prevailed. Both of
us together.”

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The past experiences of breast cancer and having the support of her husband who also
journeyed with cancer gave this participant the knowledge of how unexpected life can be and
taught her to focus on the moments that she has and not take life for granted.
Participant 7. Participant 7 is a 59 year old, Caucasian woman living in Atlanta, GA.
She is single, divorced and has one adult son. She had no previous breast cancer diagnosis and
has been living with Stage IV for 4.5 years. Participant 7 holds an Associate’s degree and was
the manager of several storage facilities, but has recently been forced to retire due to her illness.
She states that she has no spiritual or religious affiliation.
Participant 7 has had a powerful past experience with her brother who was involved in a
terrible accident three years prior:
“My oldest brother he was in a motorcycle accident about three years ago,
right before I was diagnosed and he is paralyzed from the waist down, so he, in
the beginning I was as I said, I was not as positive as I am now and he would
have no part of it. This guy boats, he just went on a 2,000 mile boating trip, he
is going to Belize for the winter, now he lives in Canada so I don’t live with
him on a daily basis. We talk a lot. Talk about the power of positive attitude,
so I feed a lot off of him. Now I do keep him up on my health, but I know that
he has his dark days too. I try to stay as positive as I can and it’s not like work,
he is so positive and you know the guy has to get into his wheelchair from
bed…”
Having her brother’s experience to look at seemed to give her a sense of positivity that carries
through to her own cancer. Not only is she reminded to stay positive for him, but she is also
reminded of how resilient he is despite his handicap. This gives Participant 7 the unique
experience of having someone to talk to when she is feeling down regarding her own chronic
diagnosis. Remembering that she could be in a worse situation (getting into a wheelchair from
bed) gives her a positive lens to look through when examining her own situation.

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Participant 7 also had a mother who passed away of liver cancer. This experience added to a
greater fear when she received her Stage IV diagnosis:
“…my mom passed away in 2007 and I was diagnosed in 2009. So my mother
passed away of liver cancer and it was a very quick death… Her death, she
didn’t seem like she had a lot of pain. It was so progressed when she found out
and it was a very quick death… I had the scans and so then right away I found
out about that it had traveled to my liver and he said this is not your mother’s
liver cancer. I was just numb. Because when he said liver, oh my God, my
mother just died of liver cancer and it was horrible.”
Having experienced the quick death of her mother and how fast liver cancer killed her gave her
fear in the beginning about how long that she had left, particularly when she was told that the
cancer was in her liver. However, she soon found out that her cancer was very different than her
mother’s and she was going to live with her cancer for a long period of time.
Participant 8. Participant 8 is the youngest of the participants at 46. She is an
Italian/Japanese woman, living in Costa Mesa, California. She has a husband and three younger
daughters ranging from the age of 16-21. She has had one other diagnosis of Stage IIB/IIIC
breast cancer in 2007. She was again diagnosed with Stage IV in 2010 and has been living with it
for 3.5 years. She has a high school diploma and was currently employed part time as a lunch
worker. She did express that she would soon be moved to a sit down position in the cafeteria as
she is having a hard time being on her feet all day. She labels herself as Catholic and is strong in
her faith. She reports having a strong faith all her life, even when it was tested. Participant 8 had
has a miscarriage in 2005 and linked this boost of estrogen to her first diagnosis of cancer. She
became very depressed but leaned on her faith for her salvation.

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Participant 8 had previous experiences of a miscarriage and being previously diagnosed
with an earlier stage of breast cancer. These incidents gave her a sense of how she needed to
view her Stage IV cancer:
“I don’t feel like I’m strong anymore. I realize that if you got cancer, you
would do the same thing I’m doing because you have no choice but to do it.
So I am not really any stronger than anybody else. I am not more optimistic
than anybody else. I am just one of the lucky ones that my treatment is
working well and I can function.”
She feels as if this is just the hurdle that she faces and she must live with it. There is a sense of
acceptance of the circumstance that she presents based on her past medical challenges.
Due to Participant 8’s life stage, her young age, and her young children, her focus on her
life drastically changed once she received her Stage IV diagnosis:
“I started taking a medical terminology class thinking I would have this second
career, because after I was cured, which I don’t even believe in that word
anymore. When my cancer came back, I had to drop the class, I mean I
couldn’t even focus and then of course I was devastated and then at the same
time, I threw away hope of having a second career because I figured that by the
time my learning was done, it would be time to die. Plus I didn’t want to take
time away from my children at school and doing homework, if I was just going
to be dying. I wanted to be with them.”
She needed to shift her view of her cancer from wanting to accomplish things for herself before
her cancer kills her, to wanting to make sure she did not miss being there for her children as they
continued to grow.
Participant 9. Participant 9 is a 69 year old, Caucasian woman, living in Tuscaloosa,
Alabama. She has a husband and two adult children. She has had one previous breast cancer
diagnosis but did not specify stage and has been living with her Stage IV diagnosis for 3 years.
She had some post graduate education and was employed part time as a teacher. She labeled her
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spiritual affiliation as Episcopalian and was a very privately religious person doing most of her
prayer on her own, although she would attend church.
Participant 9 had no previous experience with severe illness in her immediate family nor
her family of origin. She reports that it was a very different experience for her to be the sick
person:
“I did not grow up in a home with a sick parent, so this was different being the
sick person; I have not been around a lot of really sick people.”
Participant 9 describes how her age and life stage contribute to how she views her Stage IV
breast cancer:
“Of course at my age, people are dropping dead all around me, you know even
younger people who are supposedly in good shape, runners, falling off their
bicycles and dying in the road, from heart attacks and things. I think my age
has something to do with my outlook. If I were 40, I’d probably be frantic
every day and every time I had a hangnail I would think it was some new
cancer, but you know I don’t want my life to end right now, you know I’m
enjoying my life, but I’ve had a great life and I’ve got to have my
grandchildren living here and be a part of them. I’d love to see them graduate,
go to college, get married, and have babies. I may or may not. That is not
going to keep me from having a good day today. The cold rain is affecting my
outlook worse than the cancer, and I am sick of this weather.”
She is able to look at all that she has experienced with her children and grandchildren and be
satisfied with her life. This has the ability to help her to not allow having Stage IV breast cancer
to control her outlook on her own life.

Participant 10. Participant 10 is a 50 year old, Caucasian woman living in Alpharetta,
Georgia. She had never been married and had no children. However, at the time of the interview
she was living with her two nieces (19 and 17 years old) who she considered her immediate
family. Participant 10 had no previous diagnosis of breast cancer and had been living with a
Stage IV diagnosis for 3 years. She had some college education and was currently unemployed,
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previously in advertising sales. Participant 10 did not label herself as associated with any specific
religion but did hold very strong Christian beliefs and spoke of God often in her interview.
This woman had had a close personal experience with taking care of someone with a
terminal illness. She had experience as her mother’s primary caretaker through her illness and
passing from Acute Myeloid Leukemia (AML):
“My mom died in 1995 from AML and I was for the most part her primary
caretaker. So that definitely watching her, taking care of her, being with her in
treatment, has been one of the things that influenced me. Just watching her no
matter what, no matter how sick she was, going through bone marrow
transplants, there are so many crazy treatments, she really fought the disease
hard. She always, always, fought.”
Not only was this woman able to see an example of strength, she learned a great deal about how
to handle doctors and information:
“…my mom always made it very clear to doctors…we knew our
responsibilities, I knew my responsibilities, me or my aunt if she was there, our
responsibility was to ask questions of the doctors when they were around,
because she was at a teaching hospital a lot and even if we didn’t have
questions that she could think of, we had to make them up, because her belief
was, the doctor needed to know that beyond a shadow of a doubt, she had
control of her care. She wanted their opinion and she got their opinion, but she
was in charge and they weren’t. I think that has been really significant part for
me…I want her opinion [my doctor] and I value her opinion, but in the end it’s
my life and my decision. I don’t think doctors are used to that, I really don’t. I
think they’re used to coming in and telling you what they think you should do
and everybody just kind of rolls over and says of course.”
Learning through her mother’s experience led to an attitude of empowerment about her own care
and how it is handled. Additionally, seeing her mother so sick and going through so many
treatments prepared her for her own future of treatments and the inevitability of her own illness
taking hold.

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Each individual participant has a different background of experience, family, and life
stage. These individual characteristics play a role in the overall lens that these women examine
their Stage IV breast cancer with. It is important to gain an understanding of these details in
order to truly capture the lived experiences of this phenomenon, but also to be able to so clearly
see the overarching themes that do arise despite individual circumstances.

Cognitive Appraisal

There are two aspects to the cognitive appraisal of having a severe illness, primary and
secondary. Primary cognitive appraisal is the reaction to the diagnosis and first conceptualization
of the illness. Secondary cognitive appraisal refers to the evaluation of the illness and how the
person manages the demands of the illness (Samson & Siam, 2008). In the current study
participants described primary cognitive appraisal through the examination of reactions to their
Stage IV diagnosis and secondary cognitive appraisal with whether or not they have come to
terms and accepted the Stage IV illness in their lives.

Reacting to the diagnosis. The reaction to receiving a Stage IV breast cancer diagnosis
was very powerful for all participants. There were a range of emotional experiences including,
shock and numbness. Women initially were in shock, feeling numb and were confused about
what this diagnosis meant for their lives:
“She said I am so sorry to tell you what you have. Its metastatic breast cancer.
I was in shock. I did not know what that meant I just know I had cancer. I will
never forget, the nurse would not make eye contact with me…. I was in shock
and was already at the oncologist the next day and that was a whirl wind of a
week of just knowing I had cancer. I still did not at that point know what stage
four meant. He just said you lit up like a Christmas tree. I said this sucks and
he said yes it does. I started on chemo but again you are going to be dealing
with this the rest of your life. I went on but I was just numb.” P. 3
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Participant 3 describes the experience of hearing her diagnosis and how she felt numb from it.
She explains how her first week was spent going to doctors and moving forward, but at the same
time just trying to wrap her head around the fact that she had cancer. In her experience there was
also a sense of understanding the magnitude of her diagnosis based on the reactions of the
medical staff (nurse and doctor).
Participant 5 also describes this common feeling of shock regarding how she was making
sense of this in combination with everything else that was going on in her life:
“Well I went in shock for about a day it was June 15th [the day she received the
metastatic diagnosis]. It was a little harder; in fact it was two days before my
fifty fifth birthday. So that was hard. I was one of the persons, rationally or not,
I was one of the people who was like oh that’s never going to happen to me. In
May 2012 I was just starting to get my energy back from all the things I had
been through.” P. 5
This woman describes a common reaction to the diagnosis in the context of a person’s life. Each
of these women had plans and previous views of their lives and when given this diagnosis, the
rest of their lives changed. The importance of the Stage IV aspect of the diagnosis is the
permanence of the disease. There is no room for these women to think that there will be
sometime in the future when they will be rid of this breast cancer and where they could assume
their life as it was prior to diagnosis. The change that these women must conceptualize is a
complete and permanent life change.
Participant 8 highlights the differences between having a diagnosis of a curable stage of
breast cancer and having incurable Stage IV:
“When you’re in an early stage and I was diagnosed as a 2B/3A (see Appendix
A) so that’s not super early, but it’s not a 4. You are kind of built up by
everybody as a strong courageous woman who is going to beat it. You start to
feel like that. Where first of all everybody gives you positivity because they
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don’t want you to be scared. Which we need at that time. So you really do,
when I see new women, I tell them the same thing, you will see how strong
you are when you’re done, you always assume you’re going to be done, you’ll
see how much you can handle and see what strength you have and you see how
important life is. Everything becomes special. Like the old cliché, the roses
smell prettier and the sun shines brighter. All of that happens. The sun rises
beautiful. My kids, babies first giggle. When I was diagnosed the second
time, I thought I’m dying now, that’s the difference. That’s where you lose
hope. You throw away your dreams and you think that you’re dying that
minute even though you know that you’re not going to die that minute. I tell
people, that’s the first thing I say, you’re not dying today. It took a while for
me to feel like I wasn’t just waiting to die.” P. 8
With a diagnosis of Stage IV participants commonly described this idea of thinking that they will
die soon and that this will kill them very quickly. This is a common misconception of this
disease by those diagnosed and by the common public. Personally, prior to conducting
interviews, I assumed that these women were not going to have had this disease for long before it
would take their lives. This is not the case and women live many years with this diagnosis. Due
to this, the primary cognitive appraisal includes an understanding that you are not waiting to die
each minute, but that you still have many years of life, life that now includes living with and
continually treating Stage IV breast cancer.
Accepting diagnosis. At the time of the interviews the participants of the current study
were in the middle of life with Stage IV breast cancer, having now lived years with their disease.
Secondary cognitive appraisal for this sample consisted of coming to terms with their diagnosis
and accepting their disease. All participants reported a certain level of acceptance, some accepted
it completely and others were still on their journey.
Participant 4 describes being totally accepting of her diagnosis but specifies what that
means for her:

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“Yes, I have [accepted my diagnosis]. I did pretty early. That’s largely my
personality. Um, I am capable of accepting things that I don’t like and realizing
that I can’t do much about them. So what are you going to do? So, I have had a
little easier time accepting it than some people I have seen. That’s not to say
that I am happy about it or totally okay about it because I am not.” P. 4
Accepting the diagnosis, for all participants, did not mean that they were content or satisfied with
it, but acceptance was more an understanding of their situation and what they needed to do to
negotiate the challenges it presented. Participant 1 elaborates on this acceptance:
“Well, I am a firm believer in you deal with what comes to you in the best
manner that you can and I am disappointed, of course, …because when cancer
gets into the bone, I know that is going to spread and it is spreading, but I can
sit around moan and groan and play Devil’s advocate or whatever, or I can do
what they tell me to do and try to do it the very best and knowing that this is
something I will have. I will have it as long as I live. I will be taking
treatments as long as I live.” P. 1
Some of the other participants were not as confident in their acceptance and described
different levels of acceptance:
“Yes and no. Yes, because it’s there, it’s reality. I don’t know how to describe
this, but this is a hard one for me… At the same time, there is this weird
hesitation and I don’t really know how to deal with that.” P. 10
Participant 10 explains that there is still hesitation even though she understands the reality of her
situation. Participant 9 also describes how the fact that she feels physically good at the moment
makes it harder to have a strong sense of acceptance:
“Well yes, I know I have cancer and I know that I’m not going to be cured and
I know it will kill me one of these days, I just don’t know when, but I feel great
so I guess right now, I’m in some sort of denial, because there is nothing
flashing in my face saying you’re on the way out.” P. 9
Not feeling the physical effects of the cancer has caused a sense of denial for Participant 9. For
many of the participants there seemed to be an overall sense of accepting the reality of the

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situation but some levels of hesitation or denial when the cancer and/or treatments were not
slowing them down physically.
Reality of diagnosis. There is another theme that participants spent a great of time
describing as an important part of the cognitive appraisal of Stage IV breast cancer. The reality
of how different having Stage IV breast cancer was from having other, curable, forms of breast
cancer was a prominent focus within each participants’ narrative. Living in a culture where
breast cancer awareness is prevalent in everyday life, at the grocery store, NFL football games,
commercials on television, etc., where awareness is centered on reaching a cure or being a
survivor, creates a unique experience for these women.
First, many women described how they viewed the seriousness of their diagnosis and the
incurable nature of their disease:
“I’m really intelligent enough to know that it’s crazy, like Stage IV breast
cancer, oh okay, shit!” P. 10
“You know when you have stage four. Uh oh, I feel an ache. Is it in the bones?
I am going for an MRI tomorrow; I told her you know I have a headache… Of
course yes, I question everything.” P. 3
Many participants spoke directly of the difference that they felt between Stage IV and other
curable stages of breast cancer.
“A lot of people don’t understand stage IV cancer. I think in general and I
used to think this too, I have the good cancer because it can just be cut off,
that’s an exact quote that I have said and I think the whole world thinks like
that. I think the whole public thinks breast cancer just gets cured.” P. 8
Participant 8 spoke personally about how she thought all breast cancer was curable and how she
feels that the public in general views breast cancer in this way. Participant 7 had two powerful

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examples of experiences she had directly with friends and family and their inability to
understand why she was still sick:
“Yesterday at golf somebody said, is everything okay now? I said, no I’m
stage IV metastatic, not curable. She just had a look like she didn’t have a
clue. People like that, you want to almost say, yes everything’s fine because to
me it is ignorance, but it’s not her fault.” P. 7
“My brother and his girlfriend and I were at dinner one night and I had a scarf
on, but it was just because I like to wear scarves, and a lady came up to the
table, a complete stranger at a restaurant, she said hello sister, are you a
survivor? I said well kind of. She went, blah, blah and left. So my brother’s
girlfriend said, you were weird, what was that all about? I said, it’s difficult to
answer a question like that, because I’m still struggling with it. She said, what
are you talking about?! I thought you had your lumpectomy and your radiation
and your chemo. Here it is my brother’s girlfriend. So that was like, is it my
brother that’s clueless? All of my family is in Canada. They don’t get it, even
my own family. Because here’s a situation where she wanted to know why I
was uncomfortable about that lady, and I said because I don’t know what to
say, am I a survivor? Some people feel like you are a survivor from the day
you are diagnosed. Well that’s not how I feel. When you see the cancer walks
and all the pink things, you know, some people have stage 0 and they are out
there. There is a lot of fluff out there. You don’t know that until you’re in the
bubble.” P. 7
These two examples speak loudly to the specific nature of the disease. Many participants felt it
difficult to explain their situation to “outsiders”. As Participant 7 put it, being in “the bubble”.
She also carried with her a quote from a friend of hers with Stage IV breast cancer. The quote is
in regards to how women with Stage IV seem themselves among women with other stages of
breast cancer:
“My friend in the support group says, “we’re the turd in the big pink punch
bowl”…I thought man ain’t that the truth.” P. 7
Participant 4 even reported the experience of having been asked to leave breast cancer support
groups due to the severity of her illness:

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“In 2003 when I was diagnosed there was breast cancer support groups and I
would go there but, I would be the only stage four in there and I was actually
asked to leave a number of groups because I scared them. They didn’t want to
face that. Which I get it, it was a different set of concerns, there concerns were
reconstruction. What do you do when you’re done with treatment, I just could
not help it. Well, I am never going to be done with treatment and I am thinking
about dying in my thirties, it was a different set of issues.” P.4
These types of experiences show that not only do the women in this sample feel that they do not
belong with other, curable forms of breast cancer, but they communicate that they are receiving
this message from both women who do have curable breast cancer and the general public (even
friends and family). These participants are not creating their own “bubble” themselves, but are
being separated and sometimes cast out due to the stage of their cancer.
Participants 9 and 10 reported an interesting realization of the fact that their breast cancer
was incurable. The reality of the situation was difficult, but also gave them a certain sense of
comfort when compared to other stages of breast cancer:
“From the first diagnosis, I think I lived more in fear of the cancer coming
back before it did than I have since the second diagnosis, because now it’s
back and they are dealing with it. I have more fear of the unknown than I have
of facing a bad situation, but kind of knowing what I’m going into. I don’t like
just being totally in the dark about things.” P. 9
Participant 9 was able to compare having a curable stage of cancer and the fear of it coming back
with having an incurable stage of breast cancer and knowing that you can spend your time
treating it. Participant 10 reports a similar feeling and how she prefers to simply treat her cancer:
“I look at so many of my friends, like I have three or four friends that have
gone through this, they went through it, they had their surgery, they had their
chemo, some of them had radiation, done, cross it off the list, no problems. In
some ways I think that’s harder, because for probably 50% of them, it’s going
to come back and so I don’t think I would want to live in that. I think that
could be tricky to like know that, and so for me I kind of know. People have
asked me, even doctors, oh, okay so it’s in remission, and I’m like no, not
really. They look at you like you’re being dramatic, but I’m not.” P. 10
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The theme of reality clearly shows the differences that are abundant between Stage IV and
other stages of breast cancer. Each woman spoke of this reality and of the difference that they
felt in how their cancer was something that would forever be a part of their lives and never
something that they could be cured of or survive from.

Adaptive Tasks

Adaptive Tasks are the resources utilized and the components of how a person functions
within their disease (Samson & Siam, 2008). These tasks include physical, psychological, social,
spiritual, and vocational. Within these tasks the participants described the themes that arose for
them and how these added to their experience of Stage IV breast cancer.

Physical. The physicality of this disease is undeniable. These women struggled with
cancer in their breasts, lymph nodes, bones, liver, and brain. It was made abundantly clear, by
the current sample of women, how physical struggles and the deterioration of one’s own body
influenced the experience of Stage IV breast cancer. There are two themes that fall under the
physical category, treatment side effects and fear of future body deterioration.
Treatment side effects.
“One of the first times I went to the support group, this girl is like, “ah if the
cancer doesn’t kill you the treatment will”.” P. 5
The reality that the treatment side effects can be worse than the cancer was clear
throughout each narrative. Even the participants who were physically doing well and treatment
was working, had many stories to share about how past treatments took a harsh toll on their
bodies. All participants discussed the numerous treatments that they took. Pills, injections,
chemotherapy, radiation therapy, experimental drugs trials, and the like, were a substantial part
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of living with Stage IV breast cancer. Each treatment was paired with a multitude of side effects
and each treatment would affect individuals in different ways depending on their body.
“Sometimes you just don’t feel like you have control of your body from top to
bottom.” P. 7
In some instances, treatments would be working and successful in slowing the progression of the
cancer, but it would be breaking down their bodies:
“Once treatment started working, my bones were bad and I was told not to
walk for a longtime and that put a damper on things. It did heal over time and
eventually, a few years into it, I resumed as close to a normal life as I could.”
P. 4
Participant 1 describes a lack of overall physical ability due to side effects from her treatments:
“The one thing was I was very active physically. I went to a work out three
mornings a week and my friend and I walked like a mile and a quarter every
day it wasn’t raining. We were doing all of these things and I had to stop all of
that. That was not easy, because I know I am losing muscle mass and I don’t
have a lot of stamina. I have to rest a lot.” P. 1
This woman also had to give in to taking pain medication, which is something she was trying to
avoid:
“I am in I guess a bit of pain, I don’t pay a lot of attention to pain, but I have
lot of pain in my shoulders and my neck, I am wearing a collar to try to relieve
some of that and then the hip down the left leg. I am dealing with a good bit of
pain and I am taking pain pills and that is something that I didn’t want to do,
but I just can’t make it without them.” P. 1
It is interesting to see how in the beginning of the statement she describes a “bit” of pain and
ends the statement with a “good bit” of pain. Women described a variety of physical ailments,
including pain, sores, neuropathy, fatigue, hair loss, breaking bones, inability to walk, vaginal
dryness, and low sex drive. The side effects to treatment seemed to create an overall difficulty in

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the ability to live life and function on a daily basis. This deterioration of the body from
treatments took away from the quality of these women’s lives.
Speaking specifically to the differences of having a Stage IV breast cancer diagnosis
when compared to curable stages of breast cancer, there is no end to treatments. These women
were fully aware that the treatments that they were taking, the ones that may have been slowing
the progression of the cancer, but were breaking down different physical and therefore active
parts of their lives, would go on for as long as they lived. Each women described how their life
was a process of moving from one treatment to another with the inevitability that you will run
out of treatment options one day. Participant 7 spoke of this with emotion:
“I know I have a lump here and a lump there and things like that. One day we
were talking about, once you have a scan and they know that the treatment
you’re on is not working, it’s inevitable you’re going to have this conversation.
There are lots of chemotherapy programs, but ultimately you’re going to run
out and my doctor has said more than once, you know we’re going to have this
conversation one day. Of course, then you start crying.” P.7
This woman was speaking of the conversation that she was going to have in the future about
when to stop trying to fight the progression, when there are no more treatments to try and when it
is time to allow the cancer to kill her. This is a startling fact for women with Stage IV breast
cancer, that is, if they live to this point.
Future body deterioration. Despite the multitude of side effects that the participants
discussed, at the time of the interview, many of the women were doing quite well physically. For
example, Participant 3 was working on running a marathon with her daughters, Participant 7 was
playing golf and traveling, and Participant 9 was not in need of physical support and was taking
care of daily functions on her own. Towards the end of the interviews, half of the women spoke
directly to the fear of how their bodies may deteriorate in the future. A striking reality that
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women with Stage IV breast cancer face is the fact that their bodies will continue to deteriorate
as they utilize one treatment after another. There will be a day where the options for treatments
runs low and their bodies will be taken over by cancer. As the cancer spreads, it will gradually
compromise more of their physical abilities. This is a guarantee with this incurable disease. This
fear directly influenced these women’s experience. Participant 3 gave an emotional answer when
asked about the future of her body:
“That my life has not changed as far as doing my everyday thing, I am still
doing my everyday thing. That’s the reason why [my life quality is high]. It’s
because nothing has changed. Really I can do things faster because I have no
hair to wash.
Researcher: But, if you get to a point where you can’t do everything that you
can do now, how will you keep your quality of life alive?
I don’t know. I have thought about that. I don’t know. I think that’s going to be
very difficult for me to deal with. I don’t know.” P. 3
When asked to rate her quality of life (0-10), Participant 2 gave her quality of life rating with a
time frame:
“My quality of life at stage 4 is maybe 8 because there is a little bit of pain and
side effects. Now I am not saying it will be 8 next year if you call me back or
next month…” P. 2
Participant 8 expressed her fear with a vivid description of what her physical and mental state
may be in the future:
“It’s easy for me to say I’ve come to terms with it [cancer], because I feel
really good right now. When it comes back again and when the medicines start
to not help it, and when I know that I’m really dying and when I’m throwing
up and my stomach doesn’t feel good, and my kids are watching me suffer, and
I think oh my gosh I really didn’t do those 18 things I needed to do and now
I’m dying and now I can’t work, that my answer might be different.” P. 8

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At the point of the interviews, each woman described or alluded to the future and how quality of
life may be impacted by the bodily deterioration from cancer and treatments down the road. The
overall physical abilities that many of these women still maintained may have led to the higher
ratings of quality of life.
Surprisingly, it was not the idea of death or mortality that created the most negativity in
the physical lives of the participants, but it was the more unpredictable and unexpected future of
how their bodies would feel. This in combination with the current and past physical responses to
treatments created a difficult picture of the physical struggles that women with Stage IV breast
cancer faced. The many different treatments that they endure and how these will continue the rest
of their days is one of the most difficult differences between having Stage IV and another stage
of breast cancer.

Psychological. The psychological adaptive task refers to how someone maintains control
in their life and the emotional needs that they have to address. The women in the current study
had three themes that were identified to help in the description of their psychology --mortality, a
need for connection, and a need for education.

Mortality. Mortality was a powerful theme. Although, it is assumed, that all women who
received a diagnosis of breast cancer, despite the stage categorization, examine their mortality or
have thoughts regarding their own death, there is a strong difference within this population.
Women with a Stage IV diagnosis, will die from their disease, but the timeline is a great
unknown. The length of time that this sample had lived with their diagnosis was unanticipated by
the researcher. These women were living multiple years with this diagnosis, and on average were
doing quite well physically. This extended period of life after diagnosis, brought with it, an
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extended amount of time to plan, dwell, and process mortality. Participants spoke candidly
regarding this unique situation:
“So it’s very weird, basically you face your end of life issues way before the
end of your life, so that even affects how you make decisions from now on.
That’s a thing that is unique.” P. 8
“Yeah, it’s [thought of death] there first thing in the morning when I wake up.
It’s there. That’s just the way it is.” P. 3
“So some people will ask me doesn’t that scare you, aren’t you nervous, and
I’m like we’re all going to die sometime, right, we’re all going to have
something to battle in our lives. I happen to have a more, keener awareness of
it.” P. 10
These three participants were all describing the heightened awareness of their death and how it
was present in their life.
Participants also spoke of how they were spending time making plans and preparing for
their death:
“Holidays are bittersweet. I’m lucky I’m here for it, yet I know that one day I
won’t be. The difference between me and you is that you know you’ll die
someday, and I know I’m dying, it’s just a matter of how long it takes to get
me. So it’s never really far from my mind. I am trying to live, but I am trying
to plan my death.” P.8
“I need to do a whole lot more prep work regarding my mortality. There are a
lot of things that I seriously need to take care and things that I seriously want
to do and realizing the importance of working on, what I would consider, the
best health possible.” P. 5
One interesting aspect of the elongated mortality of this sample was that it gave them time to
prepare and gave them time to conceptualize how they were going to view their inevitable death.
Participant 1 describes how she responds to her mortality:

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“…cancer can’t kill love and it can’t kill friends and it can’t kill, just a whole
list of things cancer cannot do. It is very true. If you can live with that, then
you can pretty well make it as far as your outlook is concerned.” P. 1
In her description, Participant 1 expresses that although there is a reality in mortality and that the
cancer will be what kills her, that there are still many things that Stage IV cancer cannot kill such
as love and relationship. This extended period of mortality almost forced these women to accept
that this is a part of who they are, and they can either choose to live in their mortality or to live
with their mortality and to use it to shift their perspective on life.
Participant 8 expressed the extent to which mortality and the length of time spent treating
an incurable disease had on her family:
“My youngest one came up to me a year or so ago and said, “you know mom,
will you be here when I graduate high school?” I said, absolutely, because I’m
doing good. She goes, “well will you be here when I graduate college?”, and I
said yeah, probably. She goes, “well what about when I get married?” Well
that depends on how long you take to get married, but I said, I might be sicker
by then because I’m preparing her. So she goes, “what about when I have my
kids?” I said I don’t know, but just so you know, if not, I’ll be in heaven and
I’ll be seeing you more than ever. That’s sad that I have to answer questions
like that, where the average person doesn’t. It’s sad my kids have to worry
about them. Life is precious.” P. 8
The last statement, “Life is precious,” truly captures how Participant 8 has to shift her view
within her mortality. She describes a heartfelt conversation about death with her daughter and
how her mortality is so unpredictable in regards to timeline. This unknown is not different from
anyone, no one knows exactly when they will die, however, for women with Stage IV, they are
given a more limited time frame and the prescription of what will kill them. This leaves these
women with a perplexing situation to make sense of their inevitable mortality for themselves and
for their families, particularly those with younger children, such as Participant 8. Additionally,
the above quotation shows how the mortality within the relationship between her and her
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daughter changes the relationship and leaves Participant 8 with the process of slowly detaching
from her daughter’s life. She is preparing her daughter for the fact that she may not physically be
there at significant milestones in her life.
Living with the diagnosis of Stage IV breast cancer is a unique experience, particularly in
regards to mortality. The women in this sample were placed in a situation where they needed to
accept their unpredictable mortality timeline and utilize that in shifting how they will chose to
live each day.
Need for connection. One of the commonly described aspects of how women in the
sample dealt with their psychology was in regards to connecting with others. Each woman
described the importance of making a connection with other women with a Stage IV diagnosis.
Participant 8 describes the women with Stage IV that she has spoken with who feel so isolated
and who does not have a strong connection to others:
“I just think it’s sad that the ones that are dying, some of these women lose
their husbands, their husbands are tired of dealing with it. They lose their
homes. They lose everything because they lose their jobs and then they lose
their insurance, then they pay their $900 COBRA bill till that runs out. Then
by that time, they’ve lost their home and then they have nothing. Who cares
about them? Somebody has got to. They don’t ever get to be done and get
cured. I just hate that they feel so left out and so alone and God please
somebody pay attention to me I’m dying from this cancer that you think you
are doing so much for! My heart breaks for them and that will be me some
day. Someday my heart will break for me too.” P. 8
Participant 8 gives an emotional description of the struggles of this disease and the isolation that
can be felt. The need for connection between the participants and other women with a Stage IV
diagnosis was prevalent. Unfortunately, few of the participants within this study utilized support
groups or psychosocial resources. There was only one support group for metastatic breast cancer
discussed that two of the participants frequented. The women who did not utilize supportive
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resources reported not having access (location and travel difficulties), not knowing if any existed
or not considering them.
Participant 3 describes her personal feeling of isolation, particularly in the beginning of
her Stage IV experience:
“I was like, I don’t understand, I can’t find a support group. I don’t want to go
through breast cancer, I don’t want to go to the other breast cancers, I am sorry
they are not going to be dealing with what I am dealing with. I feel like mine is
totally different when it’s not curable. Let’s be real. Um, I couldn’t find
anyone I knew. I had friend who had stage 1, stage 2, stage 3 but no one is
even in my group. I called the hospital and asked for a support group and they
said no. So at MD Anderson I said to the woman and she said well, we did
have one and they just died… I am still looking for a connection and I had a
friend who was stage three and I was almost like… how close are you to stage
four? I felt so alone that I did not have any resources.” P. 3
The last two statements show the desperation that she felt in the beginning and how she was
reaching out to anyone who may understand her disease on a personal level. Participant 8, one of
the two in a support group, continues this dialogue by describing the need for more support
groups:
“If there are 30 support groups for breast cancer, why aren’t there at least three
for metastatic cancer? Why doesn’t every hospital have one day a month just
for the stage IV’s, even if only two people show up. Maybe it’s not financially
feasible if you only have 2-3 people so you don’t want to waste your time, but
guess what, somebody needs to waste their time because we have no one to
talk to.” P. 8
The reality of the situation is that there are a limited number of supportive resources for this
population. There is a need for more specialized support group resources that are specific to
Stage IV breast cancer. It is important to clarify that the participants varied on their willingness
to attend or desire to have a support group, but all women discussed the need to talk to others in
their situation. Participants reported a need for more solidarity and knowledge of others going
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through the same ordeal. Having other women to talk to about the unique experience of this
disease is an important need for these women.
Several of the participants utilized internet resources and blogs specific to women with
metastatic breast cancer. These were primarily used to gain information on treatments and side
effects. Unfortunately, internet resources can be more impersonal. While these
psychoeducational resources are beneficial and several participants had turned to these resources,
participants also spoke about how the internet and its abundant resources did not meet needs for
connection with others in similar circumstances. Participants did not report utilizing these
internet base resources to discuss issues such as emotional struggles, and psychological
reactions.
In addition to connection with each other, participants also spoke in terms of wanted to
feel connected to medical staff. The need for doctors and nurses to be able to connect to their
emotions was described by several participants. Participant 3 recalls an experience where human
connection was not given when she received her diagnosis and this memory has remained with
her for years:

I will never forget, the nurse would not make eye contact with me. That
bothered me and it still bothers me today. P.3
For this participant, the need to be able to look at another’s eye when she was going through
such an emotional time was needed and not given. Human connection is something that the
participants reported as a need. Participants describe a need for doctors, nurses and staff to have
a greater understanding for the emotional demands of living with Stage IV breast cancer and to
remember that as they deliver the medical facts regarding their cancer.

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Need for education. The final need that was described by all participants was a need for
more information in order to navigate their disease. The abundance of information that the
participants reported having to learn regarding treatments, side effects, medical terminology to
understand results, insurance information, hospital bills, and the like, was staggering. All
participants expressed a need for clarity in information given, a way to access information in one
place, and resources to help them keep up with all of the information necessary to successfully
live with Stage IV breast cancer. Many of the women spent a significant amount of their time
researching and trying to learn and understand everything that was going on with their bodies:
“I spend on the average, I spend 1-2 hours a day [researching on the internet]. I
mean sometimes it is looking at forum sites of other women and discussions of
the side effects- a cream for neuropathy or things they have found to help.” P.
2
“You know when I meet with the support group. Everyone is on different
treatments and things I have never heard of and it’s like I didn’t know that was
available and it’s overwhelming with the clinical trials. You don’t know
enough about all that. It’s a learning curve. It’s been on the job training here. I
told you when I went to my first oncologist. I was like, I can’t answer this, and
I can’t answer that. So, she was like take this book home and read up on this.”
P. 3
A reality of this disease is that it is very different for each individual woman. Among other
things there is a great dependence on where the cancer has spread. Commonly among this sample
it had spread to the lymph nodes, liver and bones, but it has the ability to spread to any organ in
the body. This leaves the women with the need to learn about different organs, systems of the
body, and how treatments affect each part of the body. When asked about needs, Participant 8
replied:
“Knowledgeable social workers. I have not really found many who know more
than the average person through doing research. So, when I go to them and say
here is my situation. They come up with the same old stuff that I have gone
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through and can’t do or didn’t work for whatever reason. They just don’t know
anything else and I have to figure it out on my own anyway.” P. 4
She was trying to search for someone who could help give some direction in the sea of all of the
information she was trying to take in. Based on the narratives of this sample, these types of
organized resources are limited. Participants 8 and 7 discussed how they looked to books for
resources. They report that there are books out there but that the information is not always
helpful or that they are not always available when they are needed:
“There was a book, I forget her name, she wrote a book, things that I wish I’d
known about stage IV metastatic, yada, yada. It wasn’t specific, this is what
you need to know. Hers was all esoteric. You know, we had this charity
event. I want to know am I going to get diarrhea, get constipated, those are the
real issues…your body just shuts down and that’s what happens. That’s the
real issue. Those are the things that I searched for.” P. 7
“When my cancer came back the second time, there was possibly a book on the
internet that you could order and it took two weeks. That doesn’t help. I think
it is getting a little bit better, but you need to hear about your story and what
people go through when they are like you. All of that was missing. You’re
desperate for that kind of stuff. I got a book called 101 questions about
metastatic breast cancer, but I swear it took a year to find it. By that time, it
had been a year, I needed that my first week. I don’t understand why there is
not a way for them to let people know that stuff is out there.” P. 8
The participants in this sample shared thirst for information, direction and help in
navigation. This was a powerful need among all women. Despite the individual circumstances,
from the woman with amazing health insurance and a close family to the single woman who had
to rely on friends and was battling pharmaceutical companies, all participants spoke to a need for
more information and clarity in how to obtain that information.

Social. The social adaptive task refers to the family, friend and community relationships
that people utilize to navigate their disease and gain support. The description of social support
emerged throughout each individual narrative. This was a common theme across all cases.
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Supportive relationships discussed included family (of choice and of origin), friendships,
neighbors, and communities (i.e. church groups, exercise clubs, blog websites). The women
described how relational support was essential in living with Stage IV breast cancer and this
support helped them in many ways including personal growth, relieving of psychological
distress, and provided them with the knowledge that they were loved and cared for.
“I think it’s a really key thing [social support] and can be a game changer. If
you have it or don’t. Whether it’s from family or society as a whole.” P. 4
Family Support. Family of origin and family of choice were both represented in each
participant’s story. Women discussed two concepts regarding familial relationships; support
from family in the form of tangible supportive behaviors and giving and receiving love. Support,
both in actions and in love, were a key aspects in increasing the quality of life of the participants
Family supported these women in many ways. First, were the tangible supports such as
bringing food, calling to check in, going with them to doctor appointments, and taking up
household duties. These types of supports were extremely meaningful to the women.
“My daughter-in-law who is the sweetest, kindest, most sensitive person, she is
quietly the most supportive person in my life. She doesn’t talk about it, she
shows up with little container of pimento cheese from Zoe’s, and then she
always knows when I’m getting ready to go to an MRI or a PET scan and
they’ll just be a text message or an e-mail that says, you’re in my prayers. I’ll
be thinking of you tomorrow. It’s just the little things.” P.9
“My husband has gotten to be a better husband now than he was before cancer
because he is more conscious of really taking care of me, as opposed to the
normal situation where the wife does everything because that’s what wives do.
So he has gotten good at, he makes dinner for me on the days that I have my
chemo which is a very gentle chemo, but it makes me sleep so he knows I am
not doing anything that day. He is not upset if the house gets messy, all that
kind of stuff. It has been actually very good for our marriage. Not that it was
like bad before, just that he is more conscious of me. He worries about me and
thinking about me and you know what I mean. Everything we do is more
together.” P. 8
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The tangible acts of support such as bringing over food or sending a text message left women
with the knowledge that someone is thinking about them. Being in the thoughts of another person
in their lives was meaningful. Additional forms of love expression came through in the details:
“He has been very supportive, but I try not to lean on him too much. He
always comes to the big doctor appointments and things like that. He is a very,
very positive person too. My very first day of chemo, we sat next to this lady
and her husband and she was I guess in remission and it came back and she
was like (moaning) and he said move now, I don’t want you sitting next to
her.” P.7
Participant 7’s son was very observant of his mother’s comfort and aware of how she may have
compared herself to that woman. In this moment her son was showing her care and
thoughtfulness. Participant 3 describes a tangible show of family support in the form of her
husband agreeing to move closer to her children:
“When I was diagnosed I lived outside of Orlando for thirty years and my
daughter moved here (Atlanta) and my oldest just had a grandbaby. We had
always wanted to move and right after that diagnosis we said we are going. So
my husband said I don’t know how we are going to do this but we did. So we
moved here this past June and we are near the baby.” P. 3
Uprooting his life, her husband knew the importance of supporting Participant 3 in her want to
be close to her grandchild. Although it was difficult for them, he supported her by helping her
make this a possibility.
Family support was also seen in the form of giving and expressing love. Participants who
had strong family connections discussed communicating love and feeling love from their family
members.
“We have these illnesses, but a very, very close family and so there are six of
us left and of course, in-laws of those who have deceased, so you can see that I
am just wrapped up with people who love me.” P. 1
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Participant 1 describes feeling “wrapped up” in love. Families that have always been close and
loving, continue to show this love particularly when a member had a Stage IV diagnosis.
However, for some families, the illness had transformed familial relationship, creating more
discussions of love and the act of giving love more openly. Participant 8 describes this
relationship transformation in terms of a deepening and growth in intimacy:
“We talk about the things that are important. How much I love you and how
much you love me. How much I want this to be. What makes me happy, what
makes me sad? I know my husband better than I ever did and my kids better
than I ever did because we talk about those things that people normally hide.
It’s the same way with brother, sister or friends. We’re not afraid to be like
around people and love right out in public.” P. 8
Participant 8 describes a processes of personal growth in the love and intimacy that she shows
toward her family and that she expects her family to show her. This is a clear example of how
family relationships can grow rapidly with the diagnosis of Stage IV breast cancer.
Participants who had families all spoke of the love and support that they felt. Having
these familial relationships added to the quality of life for these women. The majority of the
women (8/10) described a great deal of family support and those who did not have it, relied
heavily on other supportive systems.
Family difficulties. Participants within the current study described an additional area
within family relationships that was of importance. Families, in varying detail, all had difficult
reactions to the diagnosis of their loved one. Some dealt with it better than others and all had
their own way of handling the illness:
“Well my husband still is having a very hard time with this. He is an introvert
and he keeps things in. He has a very hard time talking about it, like when we
talk, like right now. We, the girls and I, we are at the point where we crack
jokes about it. Like are you pulling the cancer card again mom? That kind of
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stuff. He doesn’t find that stuff funny. So he keeps a lot of it inside. You know
I talk, talk, talk, and he listen but you know. Like yesterday, I said I have a
back ache and he said that’s just the way you are sitting and my other daughter
was like no dad it’s not the way she is sitting. You know what I mean? But
that’s the way he is dealing with it. I come very open and we talk about it.
Every time we get the results he comes and my daughters and my mom come
when I have chemo. But, he comes for the results and he has very little to say.
He only speaks when he has something to say and he did say how much he
likes this doctor here. So, um, I wish he would express more. But that’s him,
he keeps it inside. He has talked about it to my daughters crying.” P. 3
Participant 3 captures a common reaction, specifically with husbands. Several women described
how their husbands were supportive tangibly, but were not expressive with their emotion and did
not wish to have conversations regarding the mortality of their loved one. Participant 9 also
describes this lack of connection between her husband and her illness:
“He compartmentalizes things. I think for a long time he dismissed it, he put it
out of his head, it’s not true. Because he would say things to me like on days I
literally could hardly walk from the bedroom into the den and sit down on the
sofa and think I just don’t even have the strength to go to the kitchen and get a
glass of water, he would say things like, I wonder why you feel so bad. And I
would just look at him and think, because I have terminal cancer you
dumbass.” P. 9
Participant 9’s husband showed signs of denial around his wife’s disease. This created frustration
with the participant. The communication between spouses regarding the illness were not all
lacking in connection, but this was an aspect of the spousal relationship that came up several
times.
There were also few instances where family member’s negative reactions were of a
destructive nature to the relationship:
“I was like, wait, so you stopped eating sugar and all that because of my
diagnosis and she says yea. It really blew me away, I mean she radically
changed her life. She stopped using deodorant, she won’t buy deodorant for
her daughters, she won’t eat sugar, it eased up a little bit, but she cut out a lot
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of processed foods in her diet, and will not have a mammogram… My sister
and I rarely speak anymore.” P. 10
Participant 10’s description is very powerful and shows how deeply some family members are
affected by Stage IV breast cancer. It creates fear for the individual with the illness, but can also
create fear for the family. Her sister was terrified that she was now in danger of developing Stage
IV breast cancer. The genetic component of breast cancer is real, but it is of interest how it
changed how she viewed her whole life and how the relationship was damaged.
These examples of difficulty in familial relationships due to the illness were common and
of varying degrees. Overall, however, the reactions of family members and their own processes
surrounding Stage IV breast cancer need further attention.
Friends/Community. The women in the current study discussed in depth about the
outpouring of community and friend support that they received at the time of their diagnosis and
beyond. For these women, friendships and community were not distinguished and seen as one in
the same in regards to support given. Those women in particular who were lacking in familial
support were more dependent on the gracious support that they received from their friends and
community:
“So I haven’t had any immediate support from family because they don’t exist.
In some ways it would be really nice to have a partner. I treasure my support
from my friends and my community.” P. 5
All of the participants described some form of support from friends or community. Some had
more support than others. There were several women who had such overwhelming support that
they described an intense feeling of love, care and gratitude:
“Yes, I would say when people find out that you have cancer, the outpour of
love is just overwhelming. I still have every single card that people sent me
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when I was first diagnosed. I have one of those little mailboxes and it is
completely filled from all the way to the back to front and all the way up to the
top. The meals that people brought me and how caring they were to take my
children when I had my treatment. I would just say that I never knew that I
was that well liked or loved until, you know you have friends and you do
things with your friends, but you just never know how people really feel about
you, you know what I mean? You know, you have acquaintances come out of
the woodwork and they just do nice things for you and feed your family and
send you nice cards and just thoughtful things. It really makes you feel loved
and touched. It still happens now. I had my last surgery was coming up on
two or three years ago, I fractured my femur and I had cancer in my femur and
I had to have a rod put in my hip. I didn’t tell anyone at work until the day
before I had my surgery and it was just amazing how much they cared about
me and visited me, the people that I exercise with and the gift cards, the
dinners, it’s just the outpour is just phenomenal.” P. 6
Participant 6 describes an overwhelming outpouring of care from friends and community
members. She was very touched by this and even shared how it showed her how people truly saw
her and cared for her, something she did not know prior to her Stage IV breast cancer diagnosis.
“This group of people [Sunday school class] and my family of course they just
rally around me constantly and the whole thing, but these people they bring me
food, they take me to the doctor when I can’t go on my own, they call me. I
have cards that I actually I guess they would stack two to three feet high that
people . . . it’s rarely a day even, and this has been going on for several years
now, it’s rarely a day that I don’t get a card or a call or food, or something
from one of them and all of them without exception offer to drive me where I
need to go, come sit with me if I need someone, this kind of thing. So, I am
just totally surrounded by the most wonderful people considered on the face of
the earth frankly.” P. 1
The amount of support shown to these women is inspiring, but even more so is the length of time
that this support is shown. The current sample had been living with Stage IV breast cancer for an
average length of 6 years. This is a big difference with women who are not Stage IV. The level
of support is long term and sustained in so many of these cases. Support was consistent for many
of these women throughout that time frame. However, this was not always the case.

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The uniqueness of Stage IV breast cancer is shown with the length of time that these
women fight their disease. For Participant 10 the support was great but she states “initially” what
the support is like:
“With this disease, initially, almost like to the point, not to the point, I couldn’t
even keep up with people. There were so many people who were like I’m
thinking of you, I’m praying for you, you know just really like this onslaught
literally of people who wanted to support me and love and encourage me. I
think I felt so much love and care in all of that, it was absolutely incredible.”
P. 10
Later she described how after a period of time she would stop updating friends and they would
lose sight of her illness and of showing support:
“…then I kind of got to the place where, ugh, I don’t even know, it just got to
be, how do you even tell people, I don’t know. Once you stop updating it
[friends regarding her illness], then I kind of lost sight of it [friend support]. P.
10
Participant 9 experienced friends who did not understand her acceptance of her disease:
“A couple of my friends’ reactions were a little startling when they were a little
disappointed when I didn’t fall apart. I had one say, you’re not acting right. I
said what do you mean by acting right? Well you’re acting like nothing’s
wrong and I said well, there isn’t anything I can do about it.” P. 9
This friend’s reaction shows the lack of understanding that some people had in regards to living
with Stage IV breast cancer. When you live for so many years with an illness that is slowly
killing you, that is not a curable form of breast cancer, it is difficult to understand that the only
option is to create a level of acceptance and continue with your life. This is particularly difficult
for friends of women with Stage IV specifically, because breast cancer has such a connotation
with survival and cure.

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The magnitude of relational support that these participants received and the impact that it
had left women feeling loved and cared for. This theme consistently appeared in all narratives
and touched the lives of each woman in a positive way, regardless of the amount or type of
support given. However, it was a fact that due to the longevity of struggle with this illness, friend
and community support, in many cases, trailed off. If the women did not keep others updated or
did not wish to, this form of support was subject to have less of an impact over time.

Spiritual. The spiritual adaptive task refers to how faith and spirituality is utilized to help
conceptualize the illness (Samson & Siam, 2008). Faith for participants was seen through both,
the lens of a specific religion and through more unspecified ideas of spirituality. Faith was used
as a way to cope with the cancer diagnosis and/or as a way to have a sense of peace that
everything would be O.K. Participant 2 took ownership of her diagnosis by not letting it become
an evil negative aspect of her life:
“I have never talked to Satan before and never plan on it again. I know he goes
after mother Theresa and Billy Graham, he would never bother with me. But,
that first time I had the breast cancer diagnosis and came out from that and
getting my PET scan back that it was in my lymph nodes and things. I told
Satan this is my cancer not yours and you can’t touch it. It is only for the glory
of god.” P. 2
This woman was not going to allow her cancer to become a negative aspect of her life and was
going to take control and fight her cancer through her treatments. Framing her cancer diagnosis
with her views of religion seemed to give her a sense of control in a situation where her cancer
was spreading out of control in her body.
Participant 10 felt that she had been prepared for her diagnosis, by God. That she knew
that there was going to be a challenge in her life and that this was it. This created a sense of calm
for her:
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“For me what was significant about them [PET scans] was every step of the
way, I haven’t had fear. For me that’s just my faith. I feel like God even
before I knew I had cancer, I knew that God was preparing my heart for
something, He made it very, very clear. So on the day I was having my
mammogram, I knew before the doctor even told me. I looked up at the mirror
above the ceiling and I went, oh, I literally just felt in my heart that I knew that
this is what God had been preparing me for and asked me to prepare my heart
for.” P. 10
Through her faith and belief in God, Participant 10 was able to frame her Stage IV diagnosis in a
way that fit into her life. Although she knew she would die from this disease and that it was
incurable, she was able to see this as the challenge in her life that was given to her straight from
God. She felt that God had prepared her for this and this gave her, again, a sense of control,
similar to Participant 2.
Another aspect of Faith that was expressed frequently by participants were experiences
that they had that led them to believe that a higher power was giving them a sense of peace. This
led to a relief in fear for participants. These expressions of faith were seen through significant
experiences that some women had early in their Stage IV experience:
“I have got to tell you this one thing. The last time I had a PET scan before this
last one it was June and I was living with my mom, I was moving here. It was
in the middle of June and I was living with her and I was going out for a run
and the phone rang and they called me and they said well it’s been growing
and it’s grown here and there. I got off the phone and I cried. I took off out the
door. I went for a run and it was raining and I took off and started crying and I
just couldn’t miss that run. I will never forget this guy passed me on a bicycle
and he said, “I admire you” and I said, “you have no idea”. That was so cool.
Just out of nowhere. I thought was that just meant to be?” P.3
Participant 3 spoke of this man as someone who was put into her life, just at the right moment
and giving her a comment of strength right when she needed it. In that moment she was feeling
very overwhelmed and fearful of the fact that her cancer was growing. In that moment of pure
emotional distress she was given a message of strength. Participant 6 had a similar experience
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where she felt that God was speaking to her in a moment where she needed to be reassured that
she was going to be ok:

In my original diagnosis, I had six positive lymph nodes and I looked up in the
sky and I think this was during my treatments, I looked up in the sky and I said
God, please give me a sign that I am going to be okay. Please, please just give
me any sign whatsoever that I am going to be okay. And you’re not going to
believe this, but I found six pennies while I was walking just here and there all
scattered, and they were all heads up. And I was like, oh my gosh, and there I
just said thank you. You know what I mean, it was like oh my gosh, I am
going to be okay because that was to me it was like a true connection to the big
guy upstairs. Yeah, you’re going to be okay, you’re going to have to work, but
it’s going to be okay. It’s really funny, because to this day, whenever I see a
penny and I look down and it’s heads up, I’m like, there you go big guy.
You’re looking at me aren’t ya? It’s probably all for naught, but it was my
way of thinking that I’m going to be okay. Even when I do laundry and there
is money in the washing machine and I look and it’s heads up or I have money
in my pockets, and I look at that and it’s heads up, oh my gosh. That was like
a defining moment for me. P. 6
Being “okay” was not defined as the cancer being cured or that she would survive the Stage IV
cancer, but that she would be able to continue to function and continue to have hope in her life.
Participant 6 describes this communication with God as a way for her to keep hope in her life.
Additionally she describes feeling a sense of security that God is looking out for her, even when
she is suffering with her cancer. Seeing pennies, heads up, means that she still has hope to live
for. Although this was one of the 3 women who did not label themselves with a specific religion
or spirituality, she found ways that worked for her to connect with her higher power.
Having a feeling that God was looking down on them and that he/she was acknowledging
their situation was a significant experience in how these women lived with their diagnosis.
“I can pray and praying helps. When I’m really upset, I cry and I cry to God
and I talk to God all the time, I’m never like, if I’m super stressed out, I just go
God I just can’t take this and it’s almost like, I guess I would have to say, it’s
almost like it’s therapeutic, because I always have someone to talk to even if
I’m alone. And I don’t feel stupid doing it.” P. 8
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Participant 8 describes how having God to talk to in the hard times, means she is never alone.
For many women their religion or spirituality gave them a sense of continuous support that they
could always go to and always count on.
Every woman spoke of faith, spirituality and religion as a support. Never did a participant
respond that this was not a support for them. Even Participant 4, who states she does not have a
religious label and even during her interview labels herself as agnostic, found her own way for
her beliefs to give her a sense of peace:
“I put my faith and sense of spirituality in physics and the universe and the
complexity of it. The fact that the laws of physics says energy never dies and it
just transforms and this sense of whenever I am going to die I will return back
to whatever it was I came from and that does stay with me and one of the
reasons I like being out in nature and like staying close to that… That does
give me peace. It helps.” P. 4
Spirituality was a continuous source of support and was an aspect of life that helped to create
control, sense of peace and calm and a sense of hope in the lives of these women. This theme
illustrates how quality of life was drastically increase.
Vocational. The vocational adaptive task refers to occupational work (Samson & Siam,
2008). For this sample working, not being able to work, being forced to retire and health
insurance were all a significant part of this component. Financial struggle, due to lack of work
and/or struggles with health insurance, was one of the most common causes of stress and
difficulty as reported by participants:
“Sometimes the huge thing is financial. That’s a whole other world because of
the financial. People don’t know how to pay the bills and pay the doctors and
that kind of thing.” P. 2
“Well it’s hard. It’s hard. And something that us longer termers have is the
financial devastation of it all. It’s one of the largest challenges that have
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cropped up over the last couple of years. Everything changes, it’s an
adjustment. You have to constantly adjust. I am in one of those phases right
now. I could write a book on it.” P. 4
Financial struggles were described throughout the narratives as most difficult because the illness
had such a long term impact, leading women to have to stop working and leaving them in a
constant battle with insurance companies over the multitude of treatments and medication they
were utilizing.
Leaving work. Ceasing work represented several different scenarios for these women,
including early retirement, having to change from their career to a less physical job, only being
able to work part time or having to directly quit. Only 2 of the 10 participants reported working a
full-time job. In each scenario the women discussed how the change in work status impacted
their lives:
“In work, that was frustrating. I was an artist and photographer and I couldn’t
keep doing that.” P. 4
Participant 4 later describes how she tried to restart her career, but to no avail:
“Then at some point trying to revive my career which got seriously
sidetracked. Then I started to work around the fifth year, I guess [with Stage
IV]. That went well for a while and then around the seventh year realizing that
I was going to go completely broke and try to address how I was going to get
back and that was a huge challenge and in some ways bigger than the cancer.”
P.4
This woman describes how over several years her career would begin and end. Participant 4 had
her own career as a photographer and artist and struggled to keep business going, eventually
having to quit due to financial struggle. The work that she loved, she was not able to do. This
was due to a combination of physical restrictions and lack of energy. After years of trying she
had to give up on her career.
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The physical deterioration results in many women having to change their jobs to
something less physically straining.
“Now what they are doing, they are moving me to a position where I’ll be
more desking [sitting at a desk]. I’ll be the manager where I’ll be doing the
money and accepting money from the kids and counting the money and there
will be other people doing the heavy-duty work. That to me says that I have at
least two more years that I can work instead of maybe not.” P. 8
Participant 8 described how she used to work in the kitchen as a lunch worker and how she loved
her work and interacting with the kids. However, she was on her feet all day. Due to blisters
from a treatment and the weakening of her tendons she is not able to stay on her feet and is
taking pain medication every night to function. This leads her to think to the future, stating she
feels she only may have 2 years of working left.
Participant 9 describes a combination of doctors’ appointments, biopsies and physical
energy as the root of her having to quit her job:
“I had to quit that, because librarians do not sit at the desk all day long. You
are on your feet and when I got diagnosed, I mean I had been subbing all the
way through January and end of February and then I had this head scan that
showed all these things, I never went back again, because from that day on, I
was scheduled with doctors, biopsies, and then started chemotherapy and I just
didn’t have the strength or the energy. That just went to a halt.” P. 9
Stage IV breast cancer can not only cause physical ailments that create difficulty in working a
job, but also the demands of the doctors’ appointments, treatments, scans, biopsies, and
therapies, that need to be completed and during business hours. This leaves very little time for
women to work a full-time job, particularly if the job is not supportive in giving time off for
these types of medical appointments.

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A combination of physical strain and time spent treatment Stage IV breast cancer led
many women to have to retire or quit their careers. For several of these women they took great
pleasure in their work and considered this a joyous part of their lives. To have to give that up was
something that took from these women’s life quality. Several women who were still able to work
part time were not doing what they loved to do and had to redefine their vocational part of their
life to fit in with their Stage IV diagnosis.
Health insurance. Connected to the difficulties of not working or changes in jobs and
abilities, is the second meaning unit, “Health Insurance”. The women that participated in this
study became emotional when talking about health insurance. The most common emotions
expressed were anger and frustration. More than any other topic, the topic of insurance created
fire in these women. Some participants had a more difficult time than others in dealing with the
difficulties surrounding insurance. This was due to dual vs. single income homes, family vs.
individual plans and working vs. unemployed or on disability. However, all women cited this as
a source of burden and stress:
“So, you know you are already dealing with chemo, side effects, baldness,
neuropathy, you’re going to die. You have an incurable disease and I’ve got to
deal with this [health insurance coverage]. So you know, thank goodness they
make antidepressants.” P. 7
Participant 4 described how insurance was directly impacting her ability to make more money
and the frustration that came with that:
“I am on Medicaid now and I can’t earn more than $600 per month. So, I am
forced into a box where I had to give up photography, I can’t sell prints
anymore because I am on Medicaid and every time I think about doing
something, I think I can’t do that because I am on Medicaid. I am stuck in a
trap and it’s extremely frustrating to me and I am struggling with that a lot.”
P. 4
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Participant 2 could not help but feel personally attacked by insurance and pharmaceutical
companies:
“What I have come to discover is, the enemy to me is big pharma and why. I
mean it’s against me personally, it doesn’t want me healed.” P. 2
Later adding:
“So, do I feel like a victim? Yes, yes. But, I am so tiny. So the best I can do is
fight with the information I have.” P.2
This group of participants, in particular, felt that they needed to help others that were in the same
situations they were:
“Number one, I had to worry about insurance and that has been the biggest
hurdle. Financially, every time you get a bill in the mail, it’s a lot of stress on
the financial end. Some people have great insurance, some people have
mediocre. Some people have none. I always felt blessed to have insurance
and now I’m caught up in a predicament and so I want to be able to have a
voice for that.” P. 7
Even going as far as committing illegal acts:
“There are people begging for it [an experimental drug treatment]. I know this
is recorded and I will probably go to jail for it. But, I had some of that
medication left in the back of the cabinet which I was talking about. One of the
woman on the forums was begging for it because her insurance company was
fighting it and it was helping her. So, I got her name and address and sent her
my eight pills. Which she thanked me profusely. They hadn’t been open and
she had an RX. She didn’t just read something in readers digest and think that
would help me. But, you see that is something that is against the law.” P. 2
It is important to make the clear distinction that not all participant were in such strenuous
predicaments with insurance, and not all participants felt as victimized as, for example,
Participant 2. However, those women that were single, unemployed/retired, and or had a single
income, seemed to experience a much more difficult battle with health insurance than others.

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This subsample of women is an important group to highlight. Based on the narratives it is clear
that this was a population of women that fell through the cracks in the system and were
sometimes left feeling victimized.
The difficulties with health insurance is unique to Stage IV breast cancer for two reasons.
First, battling health insurance will be just as much a part of these women’s lives as the cancer
itself. As long as they are treating their cancer and taking medication, health insurance will be a
part of their life. Second, the multitude of differing treatments, medications and experimental
treatments that these women utilize to slow the progression of their disease creates a unique level
of difficulty when trying to get insurance coverage. Overwhelmingly, for all women in the
sample, this was an aspect that took away from their life quality. All were affected even if to
varying degrees.
Coping Skills
Samson and Siam (2008) describe “Coping Skills” as what comes from the adaptive
tasks. It is how one copes that then determines a positive of negative outcome for someone
suffering from an illness. For the current sample there is one clear theme that arose as how
women cope with Stage IV breast cancer. Making meaning in their situation was essential in the
coping process. Making meaning meant something different for each women, but commonly
relationships, faith and finding a purpose in life were utilize to create meaning.

Making meaning. The ability for participants to create a meaning out of their experience
seemed to be the key aspect in having a high life quality. Understanding that there is meaning
behind their lived experience was essential. All participants spoke of differing meanings in their
lives that were linked to their cancer. Some meaning came in the form of having meaningful
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relationships. For other participants it was having meaning in their faith. And still some would
simply create purpose in their lives as a way to assign meaning.

Relationships. Participant 6 and Participant 8 created meaning in their lives through their
relationships with their immediate families. Watching their children grow, being able to see
significant life stages and being close with loved ones was extremely meaningful and added to
their life quality:
“Watching my children grow up is the best. Watching two of my three
children graduate from college. My baby still goes to college, as a matter of
fact my middle one, the 23-year-old is getting her Masters and graduates in
May. My son is getting married in August. My children and my husband are
my biggest milestones and my attitude I think has a lot to do with it. I just
refuse to give up.” P. 6
Having the experiences of watching her children grow, learn and develop and having a close
relationship with her husband gave Participant 6 a reason to never give up on life. When asked
what were the significant milestones in her cancer experience, this is how she answered,
highlighting the familial relationships within her life. Participant 8 continued this meaning by
describing the love she feels when she is close to her husband, her children and her dog.
“People say that there are blessings in tragedy and you wouldn’t think that
there are, but there are. With all the things that are frightening and scary and
fearful and upsetting and everything, I am closer to my husband, I am closer to
my children, I am closer to my parents. I’m truly fortunate that I wake up
every day, who can say that. I love my dog. I have a roof over my head,
although it’s falling apart. I just love to see my kids smile. I love holding my
kids hands. I love it when they come and talk to me and tell me about their
day.” P. 8
The relationships in her life gave her meaning and reason to get up every morning.
Participant 5 found meaning by creating connections to people all around her. She
utilized humor and valued getting to know people:
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“I’m just remembering, there were times when I had my first complete
mastectomy. I remember writing with a marker on my stomach using sort of a
backwards mirror words, on my stomach I put, “my surgical team is the best”.
Just to give them a chuckle. I mean this is just something, humor has been
important for me in all kinds of ways. I mean I really-really like people and so
when I get the chance, it’s really nice to get to just find out some more about
these people.” P. 5
Having connections with people was meaningful to Participant 5. Even relationships that were
not as close as a family member were meaningful and she found joy in connecting with other
people, including the doctors and nurses that were a part of her life.
Faith. Meaning was also created through the use of participant’s faith. Commonly,
participants would lean on their faith to make meaning of their own mortality and the reasoning
as to why they were diagnosed with cancer. Participants utilized their faith to answer the
questions surrounding, “why me?”:
“I don’t know why God lets things happen, however, I know I’m not alone and
I know that Jesus suffered way more than I am and that his suffering did good.
I’m Catholic so we believe that Jesus loves us so much, he lets us unite
ourselves to him and so our suffering can help him do what he does with his
suffering. We believe that because I am part of the body of Christ, if I’m
suffering, I’m somehow helping to bring about salvation because Jesus is
uniting my suffering with his, which brings about salvation. A lot of
Christians don’t believe that, but as a Catholic I do, therefore, my suffering has
some purpose so even if I don’t like it, it’s not quite as bad as I’m just
suffering for no reason. I just trust God. If I die tomorrow, I trust God that it’s
because it’s my time tomorrow. That helps a lot.” P. 8
Through her faith, Participant 8 felt that there was a deep meaning in her suffering. The idea that
she suffered for a purpose was meaningful and her faith had the ability to give her this.
Participant 4 utilized a non-religious belief as an attempt to normalize the meaning of her
experience and to remind herself to find quality in her life:
“I think you have one shot at it. We are alive for a limited amount of time.
Some people get a couple of weeks and die as infants and some get to a
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hundred years. I do not believe in an afterlife. I don’t believe in heaven, I don’t
believe in hell after reading all that either. I never did. It’s just like everything
else it’s a normal thing, everyone lives, and everyone dies. It’s a normal thing.”
P. 4
For several women, faith and spirituality was utilized to create meaning in their experiences of
Stage IV breast cancer. These meanings added to the quality that they felt in their lives.
Life purpose. Creating meaning in life also presented through the lens of having a life
purpose. Life purpose was described as helping others, contributing to society, and focusing on
activity. Many of the participants created this type of meaning in their lives. Participant 3
discussed how her life purpose was remembering to be active, doing, as opposed to being
stagnant:
“So, I am doing okay. I keep busy. You know and I am trying and I have job
interview next week and the support group. They ask me do I really want to
work and I am like yeah it keeps me busy you know. As long as I can.” P. 3
“Now I try to get 25 hours out of the day even though there are only 24. I
really do.” P. 3
She continued by later describing how quality of life is related to her activities:
“Just being, everything quality of life is being, everything that I can get out of
a day. My family, my friends, my activities, social life, job.” P. 3
Participants 1 and 8 both spent time discussing how their life purpose was linked to service and
helping others. Participant 8 had aspirations of starting an organization for women with
metastatic breast cancer. She wanted to give back to those suffering and help to raise funding to
increase the quality of life of other women:
“Then I started on this organization, foundation that I’m starting and I was
hoping please let this happen fast enough so that I can help someone before I
die. There was like I don’t know when it happened, but one day I realized that
I am planning something that is going to at least take years if not more years
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and the fact that I was okay with working on something like that was kind of
like the sign that I am not planning on dying anymore. So that really was kind
of like almost like a bubble burst inside me that said wow, I’m not planning to
die, I’m planning to live and I have hopes and dreams again. You really do
you just kind of throw those away. So that for me is a really significant thing
is the mental change from a dying cancer patient to a living cancer patient.” P.
8
Having this organization as a purpose has literally redirected her focus, from death to life.
Additionally she describes the meaning behind accomplishing something of importance:
“Before I die, I’ll do something important too. I guess you need to ask what’s
good about cancer. Is there anything good about it, because there is, but
sometimes you’ve got to search for it and then you might be helping people.”
P. 8
For Participant 8, helping others was the “good” in cancer. It created meaning in her life and also
meaning in her cancer experience. Participant 1 also discussed life purpose as how she creates
meaning. She began by addressing how she could not physically help others around her anymore
and how this was a loss for her:
“I guess probably what I needed or what I felt the loss was to not be
contributing anything to society basically. That was one of the things that was
always very important in my life to fill people’s needs where I saw and I can’t
do that. I can pray for them, but to go to them, you know, I can’t do that
anymore.” P. 1
Throughout the interview, this woman began to reflect on how she could still make meaning and
how she could help contribute to society. She discussed how my interview led her to start to
think outside of the box of ways that she could still help others. It was an amazing experience to
see this develop throughout the interview:
“I have such an extended family and friends that I have not suffered from lack
of attention I guess would be the way to say that, so that I really don’t know,
but this has opened up a cord of interest with me that not everybody has the
attention that I have. That makes me responsible for seeing if there is anyone
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who does need it and so it gives me a project. I am going to research that and
see what is there. Like I said, I have such a wide circle of friends,
acquaintances, family, neighbors that I am afraid I have just been sitting here
letting them fill my life with wonderful things and enjoying instead of seeing
what I could do for someone else. That’s not my nature, but you certainly have
called my attention to it.” P. 1
Making Meaning was the most commonly discussed theme throughout the 10 interviews.
This theme was predominantly related to positive aspects of life, feelings of love, feelings of
faith, and feelings of purpose in their lives. Creating meaning literally gave the women the
ability to continue to wake up each morning and face the day with something to look forward to.
More than positive attitude, more than having support or having faith alone, it is the creation of
meaning that led to greater life quality. Particularly for those participants who had less support or
did not rely on their faith, meaning was the vehicle to an increased quality of life.
Outcome. Samson and Siam (2008) describe the outcome component of their model as
either a positive or negative outcome for dealing with a severe illness. For the current population,
outcome came in the form of quality of life. With all the aspects of the lived experience of Stage
IV breast cancer, it was the women’s ability to create quality in the life that they had that led to
positivity. The theme of creating quality in life was a process more than a direct concept that was
brought up by the participants. The researcher asked three direct questions to the participants
regarding their quality of life. The first question inquired that participants describe their quality
of life, second, to rate their quality of life on a scale from 0-10 and third was in regards to what
they would need to create a greater quality of life. Many of the participants discussed life quality
prior to these questions and after this line of questioning.
When asked how she would describe her quality of life, Participant 5 states:

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“I think it’s good [my quality of life]. It could be a lot better and it could be a
lot worse. Quality of life is meaning. I am so thankful I own my home, I can
live independently but I am so lucky I have friends, I have community, I think
for the most part I am getting really good Western care. I have things I have to
do, I have things I’m looking forward to.” P. 5
Participant 5 eloquently described many aspects in her life including relationships, the care that
she is given, activities, things to look forward to, and having a home as the things that increase
her quality of life. She reports that it is through those things that she creates meaning in her life
and that it is this meaning that adds to her life quality. This is directly in line with the
Comprehensive Task Model outlined throughout the study.
All participants were asked to rate their quality of life. The ratings of life quality on a 010 scale (0 low and 10 high) were high, with an average rating of 7.5 (See Table 4.1). This points
to an overall positive outcome among this sample in the experience of living with Stage IV
breast cancer.
Table 4.1: Quality of Life Participant Rating (Scale 0-10)

Participant
1
2
3
4
5
6
7
8
9
10

Quality of Life
Rating
5
8
8.5
5
6.5
10
8
6-7
8
10

Participant 10 had one of the highest self-reported ratings of quality of life. She describes that
her illness challenges her and how she gains a sense of growth and movement from that:
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“I would rate it a 10 and I guess the reason is that physically yes there are
definitely some impacts, in this, but I feel like it’s growing me, it’s challenging
me. For me that’s a quality of life, I’d rather be in that part, I’d rather be
challenged and stretched than to be stagnant. In this, you cannot be stagnant,
you can’t. So I guess I feel alive.” P. 10
For her, Stage IV breast cancer keeps her going and makes her feel alive. This is an interesting
conceptualization of an illness that will undoubtedly lead to death. Participant 10 finds meaning
in being active in her life and her disease keeps her active, as she states she “cannot be stagnant”.
Participant 6 also rates her quality of life as a 10 and relates her illness to being a challenge:
“I have an awesome quality of life. Because I allow myself to. Even though it
is always in the back of my mind, I will not let it win. I cannot let it get in the
way of what I want to do… A 10. An absolute 10.” P. 6
She eludes to fighting her illness and not letting it win and take over her life. By keeping her life
quality high she is able to fight her cancer.
Some participants linked their rating of quality of life directly to a prior theme. For
Participants 1 and 2 this was their relationships:
“I guess we’ll say a 5… I think because of the circle of my friends and family,
I would be on a 2 or 3 [without friends and family], it is wonderful to know
that if I called on one of them, they would come immediately, you know, and
the granddaughter being here, so I would say a 5.” P. 1
“So that’s my quality of life it’s not just physical, it’s social. So I would say
8.” P. 2
Although Participant 1 rated a lower quality of life, she describes that it is her relationships that
give her a 5. Participant 2 defines her quality of life as directly linked to her social connections.
Overall, the life quality was higher than anticipated, due to the severity of their diagnosis.

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There are participants, however, that stated their quality of life was not high. Specifically,
Participant 1 and Participant 4 gave the lowest ratings of 5. These participants described the
struggles that they have with specific themes that took away from their life quality:
“Maybe not so good [my quality of life]. It was good; reasonably good all
things considered it was pretty good. The past year in particular I am starting to
question it. I don’t think it’s all bad yet but the developments of the last year
have definitely brought to the floor that I am getting into that place… Some of
it’s physical and some are the finances… I would say an average of five [rating
quality of her life]. Sometimes four sometimes six. But probably rate a five.”
P. 4
Participant 4 is clear in describing the two major themes that were common among all
participants as themes that decreased life quality. The two themes that take away from having a
high life quality are the Physical and Vocational struggles (i.e. treatment side effects, future body
deterioration, leaving work and health insurance). Participant 1 also specifically describes
physical struggles and future body deterioration as what leads her to give a rating of 5:
“I hadn’t thought of that, but I guess we’ll say a 5. I can still walk around,
sometimes I have to use a walker or a cane, but I can still get around a little bit.
I don’t always drive the car, but most days I can drive to where I need to go. I
don’t know how long I’ll be able to do that, but right now I can.” P. 1
In examining the outcome through the lens of quality of life, the women within this
sample utilized many adaptive tasks to cope with their illness by creating meaning in their lived
experience of Stage IV breast cancer. This meaning that is created directly adds to quality of life
of the sample. There are however, certain adaptive tasks that create a great deal of stress and
struggle and directly take away from quality of life.
Understanding Stage IV Breast Cancer

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Through the process of conducting, recording, reviewing and dissecting the 10 participant
interviews, it has become abundantly clear that I, as the researcher, will never truly understand
the experience of living with Stage IV breast cancer. As Participant 7 labeled it, you must be in
“the bubble”. I am not in the bubble. However, throughout this experience I have gained
knowledge that has led to an outcome that shows the experiences of 10 women and how they live
each day striving for and achieving, a high quality of life.
Women with Stage IV breast cancer do create quality in their lives. Through the
relationships that they form with family, friends and communities, these women experience love
and care. Through the faith that these women hold onto when the illness rages on, peace, and
calm are felt. Through staying active and helping others these women create purpose in their
lives. It is a combination of relationships, faith and life purpose that lead women in coping with
their illness. This coping is accomplished through the creation of meaning. Women with Stage
IV breast cancer may experience some of the same meaning making that others with a terminal
illness face. However, this population is unique in that they are living each day facing mortality
and facing a cultural misunderstanding of that mortality. Thus, creating meaning faces greater
challenge for this population.
The participants within this study struggle. From those with the highest rated quality of
life, to those with the lowest, they struggle. Financial and physical stress interact and take away
from life’s quality. Some women cannot work, others spend hours on the phone with their
insurance company. All women suffer from physical ailments from the treatments that are
battling their disease. These treatments fight a war with cancer but also a war with their bodies.
Aches, pains, sores, fears of headache and normative bodily pain, are always on their minds. Fear

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of the future. What the future will bring for their bodies and how their lives will change is a
constant burden.
Women living with Stage IV breast cancer have needs. More than anything they need to
be connected to each other and they need to be connected to information. No one can understand
them unless you are one of them. These women have a need to connect to the resources that they
have in each other. The participants also have a great need for guidance in the uphill battle of
learning what this disease is all about. From specific side effects of the newest drug to ways to
help your family cope, these women need education and information.
The simplistic explanation presented does not do these women justice. It does not capture
the complexities of the illness, nor the strength that each of these women puts into each and
every morning. However, this explanation does capture the difficulty of this disease, the
uniqueness of this experience and the ways in which these women address some of the many
struggles that they face.

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CHAPTER 5: DISCUSSION
Summary of the Findings
The women within this sample provided a detailed description of their experiences with
Stage IV breast cancer. Each experience was unique with personal characteristics influencing
how each woman viewed her life with cancer. Age, past diagnosis with breast cancer, and
previous experience with terminal illness of a friend or family member were the three most
common themes that the women spoke of as having an influence on how they conceptualized
their Stage IV breast cancer diagnosis. Although these women had diverse narratives, many
similarities emerged. The most consistant theme was the reality of Stage IV breast cancer and the
uniqueness of this disease. Throughout the process of conceptualizing, adapting, coping, and
outcome (Samson & Siam, 2008), these women spoke of the difficulty of living with mortality,
in a culture where breast cancer is seen as curable and where women with breast cancer are
labeled as survivors. These women felt as if they were a population of outsiders where the
general public was ignorant to their unique situation. They were not fighting to beat their cancer
but fighting to slow the progression and create a quality life despite the disease that would
eventually kill them. The creation of quality of life as an outcome for these women was
developed through the utilization of adaptive tasks that led to the ability to cope. Coping with
this disease occurred through the creation of meaning. Meaning was created through
relationships, faith, and life purpose. Although a small sample, the quality of life ratings were
high among the population and this was directly linked to each woman’s ability to create
meaning about her experience.

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The findings clearly showed that the experience of Stage IV breast cancer was unique
when compared with other stages of breast cancer. This uniqueness touched on all aspects of the
experience, but was evident in the themes of reality and mortality. Reality was described as the
unique experience of being a minority within the larger culture of women with breast cancer. The
realistic concept that these women would not survive their cancer and that they would live the
rest of their lives fighting their cancer, created a distinct perspective. The women in this study
did not resonate with being a survivor of breast cancer, which is the focus of much of the breast
cancer community’s marketing and advocacy. This title of survivor is a culturally accepted
definition of women who survived breast cancer and were cured of it. The women in this study
were living with their cancer, but would never reach the title of survivor. Mortality was also a
common theme. Each woman was fully aware of the unique experience of having a long term
disease that was slowly killing their bodies. Some women described this as living with mortality.
The women had many years to contemplate their death, project what their future may be, and
prepare themselves and their families for the inevitable. However, this time also left room for
some denial and pushing the thought aside. The knowledge that the cancer would continue to
spread left these women with anxiety surrounding every PET scan and fear whenever a new
symptom would arise. Understanding these unique themes is essential in understanding the
experience of Stage IV breast cancer. These are the unique circumstances that these women dealt
with on a daily basis.
There were many difficulties that these women expressed, linked to the unique nature of
this disease. The participants’ experience with the illness was difficult physically and
psychologically. Physically, body deterioration (both currently and past from side effects and the
fear of future deterioration) was either a current battle limiting their ability to work and enjoy life
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activities, or a future battle that created fear of what would happened to their bodies in the future.
Psychologically the women struggled first with the thoughts and emotions around mortality. This
was a reality that these women woke up in the morning with and went to sleep every night
thinking about. The knowledge that they had a disease that was slowly killing them and the only
fight they could accept was one that would slow the progression of the cancer, created many
difficult emotions. Women described feeling scared, shocked, and devastated, particularly
around the time of their diagnosis. Psychologically these women also struggled with the stress of
feeling isolated and a lack of education and information regarding their experiences. The women
spoke of a need for connection to each other. Due to their unique circumstances, women spoke of
wanting to be close to those who had their same diagnosis to share information, emotional
connections and strategies. Some described the need for more specified support groups and
others described a more broad need for any form of connection, despite the medium. The women
within the current study also described a great amount of stress and frustration with all of the
information they needed to gather and learn about their disease. For these women there was now,
literally, a lifetime of education that they needed to obtain. This information was not easily found
and the women described a need for a more organized source of information.
Linking Theory and Experience
The theoretical models including Samson and Siam’s (2008) Comprehensive Task Model
and Wright’s (2003) Relational Understanding of Life and Death were combine to create
theoretical tenets (see Table 1.2) which were utilized to understand the lived experiences of
women with Stage IV breast cancer. These tenets were personal history/social context, cognitive
appraisal, adaptive tasks, coping skills, outcomes, and relationship with life and death. Each of
these tenets were utilized to inform the research questions and create the semi-structured
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interviews. Through the process of data analysis, each of these were addressed, and combined,
describe the lived experience of Stage IV breast cancer.
Personal history/social context. Samson and Siam (2008) describe this tenet as
individual personal history and how it influences a person’s ability to adapt to a stressful
situation. In the context of the current study, age, past diagnosis of breast cancer and past
experience with a friend or family member who had a terminal illness, were the most commonly
discussed themes that influenced the ways in which these women adapted to their experience.
The data supports this idea that individual characteristics influence the ways in which each
woman adapts to her circumstance.
The specific characteristic of age has been previously cited as influencing how women
adapt to breast cancer (Epping-Jordan, et al., 1999; Jones, Cheng, Jackman, Rodin, Walton, &
Catton, 2010; Lindop & Cannon, 2001). The older women within the study were able to see their
cancer through a lens of a full life. These women spoke in grateful ways regarding having been
able to see their children grow and have children of their own. Younger women faced more
difficulties with having to explain their cancer to their younger children and worrying about
whether or not they would be around to see their grandchildren or to grow old with their partners.
Age, specifically for Stage IV breast cancer, made a difference for these women whose mortality
was an everyday reality for the rest of their lives. Women that were in the later stages of their
lives had an easier time accepting this daily mortality, while younger women thought more about
their young families or the goals that they had for their lives that they had to give up.
Women that had previously been diagnosed with breast cancer had mixed reactions to the
Stage IV diagnosis. Some felt more prepared and others felt more security in the predictable

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nature of Stage IV’s incurability. These women had experienced being a survivor and beating
breast cancer only to be devastated and shocked by a reoccurrence. Having the knowledge that
this cancer was not going to be cured gave them a sense of security without holding a sense of
false hope. Other women had a very hard time with the Stage IV diagnosis having had the
expectation that their previous cancer was finally gone and that this difficult part of their life was
completed. The women with previous diagnosed breast cancer had many mixed emotions with
the Stage IV diagnosis. For many of the women, breast cancer was more easily accepted as a part
of their lives since they had previously spent time with a lesser stage of breast cancer. All women
with a previous diagnosis were influenced by their past experience. This led to either an easier
acceptance of their disease or one that was more difficult to navigate. Some women felt a sense
of preparation from their previous experience while others felt defeated that the cancer had
grown worse and was terminal.
Women who had had a previous family member or friend with a terminal illness
described a level of proficiency in medical and emotional knowledge. The women described
their past experiences as learning opportunities and discussed how they learned emotionally how
to handle illness, and how it influences individuals and families. Medically, many of the women
were able to better navigate the process of communicating with doctors, gathering test results,
and even knowing which doctors and hospitals to utilize. Both the women with a past breast
cancer diagnosis and those with a past experience with terminal illness possessed an ability to
problem solve, whether with medical decisions or decisions regarding how to communicate with
family and friends. Having the ability to cope and problem solve has been linked to lower levels
of distress, anxiety and depression in women with breast cancer (Epping-Jordan, et al.). The
findings of this study support the tenet that personal characteristics influence how women
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experience breast cancer and that they utilize these past experiences to adapt to current
circumstances.
Cognitive appraisal. Cognitive appraisal refers to the process of conceptualizing the
experience of illness (Samson & Siam, 2008). Primary cognitive appraisal and secondary
cognitive appraisal are the processes of understanding how an illness will influence an
individual’s well-being and how to manage the demands of the illness. More specifically,
Samson and Siam describe this as the process of reacting to and conceptualizing the illness,
leading to the individual’s ability to complete tasks to adapt to the situation. Previous literature
has focused primarily on the first level primary cognitive appraisal and how women react to their
diagnosis (Svensson, et al., 2009). The current study also examined the reaction to the diagnosis,
but moves to the secondary cognitive appraisal and examines where the sample was in their
process of acceptance of their illness. Reactions to the diagnosis varied among individuals, but
all experienced initial feelings of shock and numbness. This reaction was linked to the reality of
what Stage IV meant, that this was a disease that was slowly killing their bodies, and would
eventually lead to their deaths. Several women had a difficult time understanding what that
meant and/or how to wrap their heads around the concept of inevitable and unyielding mortality.
Most in the current sample had lived many years with their diagnosis and were at a place
where acceptance of their disease could be assessed. All participants reported some acceptance
and none were in complete denial. There were few women who were doing very well physically
which they reported led to denial of the magnitude of their disease at that point in time.
However, all women reported acceptance and specified that this did not mean they were happy
about it or that they were content with having Stage IV breast cancer. Acceptance was defined as

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knowing that their cancer was spreading and that they were treating the progression, but that it
would eventually progress, leading to their death.
Adaptive tasks. Samson and Siam (2008) describe adaptive tasks as the specific actions
taken to achieve healthy adaptation to a chronic illness. These tasks include physical, social,
psychological, spiritual, and vocational. Previous literature specific to this population had only
briefly described social tasks. It has been shown that women with metastatic breast cancer
utilized community, spend time with pets, and communicate their thoughts and concerns with
friends and family (Svensson, et al., 2009). The current study goes beyond finding what types of
tasks women utilized, by identifying how these tenets of the theory are utilized in the experience
of Stage IV breast cancer.
Physically, women in the sample had to overcome many difficulties. The side effects of
treatments were debilitating and touched every system in their bodies. The fear of future body
deterioration was also a constant thought that the women in the sample struggled with. These
physical difficulties were a very real part of the experience of Stage IV breast cancer. However,
women within the study were able to make it through treatments and find those that would lead
to the least debilitating physical side effects. The women in the sample were physically doing
quite well at the time of interview and spoke mainly of the process of treatments that they went
through and the fear of how their bodies would fare in the future.
Socially, the women in this sample utilized support from community, friends, and family
as a way to build meaningful and valued relationships in their lives. This led women in the
sample to feelings of love, caring, and kindness. These relationships were essential for all
women and those who lacked closeness to others were vocal in the negative impact on their

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lives. Although having relationships was positive, there was a negative side that the women also
endured. This was the process of disease acceptance that family and close friends were going
through. The women in the current study described several examples of how their husbands, or
children were having a hard time coping with their disease. The reality of the situation was that
there were not many known resources for the sample to help guide them with the difficult aspects
of some of their relationships. Overall, relationships were essential throughout the process but
there are clear stressors involved among these relationships.
Psychologically, the women within the current study had several difficulties to overcome.
First and by far the most salient was the psychological impact of mortality. The unique
experience of living the rest of their lives with the knowledge and heightened awareness of their
own mortality created an interesting situation where the women had the ability to process, plan
and conceptualize their own death. These women had the ability to discuss their death with their
families, but also had the downfall of having an unpredictable timeline for their death. Having to
live life with the knowledge of disease that is killing your body, but never knowing exactly how
long you have left to live, creates a strange sense of life. For the sample it created awareness of
how precious life is and gratitude for what they had in their lives.
Additionally, the women in the sample spoke of their psychological needs; the need for
connection to other women with Stage IV breast cancer and their need for help in gaining the
information to navigate their illness. Connecting to others in the same, unique situation, was
described as a way for the sample to process their experiences with their illness and to share in
the difficulties of their disease. All women spoke of reaching out to others and the difficulty in
finding other women with the same diagnosis. The other need that women spoke of regarding
their psychology was the need for education regarding their disease, treatments, medications,
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side effects, and the like. As has been described, the information that these women need to obtain
is immense and the organization of this information is lacking. Having a way to obtain
information and resources that could help them to gain understanding of their experience was a
common need among the sample.
Spiritually, the women in the sample all spoke of how their beliefs helped them to create
meaning and understanding in their lives. The women turned toward their faith and felt a sense
of peace and calm knowing that their faith was strong and that they had strong beliefs in
whatever events of life or death would be in their future. All women in the sample utilized
spirituality as a support despite religious affiliation or agnostic beliefs. This adaptive task was
utilized to help the participants make sense of their current situation, their mortality, and how
they viewed their disease. Having a spiritual presence in their lives gave many of the women a
sense that they would be “OK” as defined by being able to accept and adapt to their disease.
Vocationally, women described their current or previous employment and how this was
influenced by their Stage IV breast cancer. The majority of the women in this study (8 out of 10)
experienced a negative impact on their work abilities. This included being forced to retire, being
forced to quit, having to change jobs, having to give up careers and having to work a less
physically stressful role at their place of employment. This shift in work force created stress in
the sample. The most stress was felt from those who had to leave careers and quit their jobs
altogether. This left many women feeling disappointed that they could not achieve the vocational
goals that they had set in their lives. In relation to this, another stressor that was common within
the sample is the difficulty in navigating health insurance and managing medical expenses.
Health insurance stress was greatest with women who had to leave their jobs and/or those
women who were single with no children and no dual income. The frustration with insurance
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coverage, particularly with the longevity of treatments, changing treatments and experimental
treatments was unique to this stage of breast cancer. Although health insurance coverage is a
common concern for many individuals with long term illness, these women commonly utilized
experimental treatments and their treatment regimen was commonly changing as the cancer
spread and as each year passed. The women who were not employed due to physical limitations
had a great deal of burden financially with limited coverage. These vocational stressors were a
common cause of decreases in the quality of life for this sample.
Coping skills. The Comprehensive Task Model describes coping skills as the means for
which adaptive tasks are accomplished. The finding that making meaning, in the experience of
Stage IV breast cancer, was the key component to coping and creating quality in life, supports
previous research on meaning making with the terminally ill. Cancer patients who reported a
high degree of meaning in their lives experienced significantly more enjoyment than those with a
lesser level of meaning, despite physical pain and fatigue (Brady, Peterman, & Fitchett, 1999).
The types of meaning that were found to be influential in increasing quality in life, relationships,
faith, and purpose, are also supported by previous research. Frankl (1959), in “Man’s Search for
Meaning,” describes three categories of meaning that are created in the face of a difficult life
circumstance; creativity, experience of relationships/beauty, and attitudinal. Creativity is
describes as being actively engaged in different activities, experience of relationships and beauty
refers to sharing love with others and having appreciation for the beauty in things, and attitudinal
refers to the attitude one holds about the illness and how they create purpose in that situation
(Greenstein & Breitbart, 2000). The current study found that the women in this sample described
these same categories of meaning. Meaning was illustrated through relationships and love, faith
and how they utilized faith to make sense of their cancer and mortality and finding a life purpose
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through activity and service. Frankl’s category of creativity is very similar to the description of
staying active and being of service to others. Relationships and beauty were also described,
specifically, love and relationships gave many of the participants a greater sense of meaning in
their lives. The category of attitude describes the way one views their illness and situation. Faith
was utilized in this way to create meaning as some women used their beliefs to have a more
purposeful view of their illness and their current situation. Meaning was the catalyst in the
creation of quality of life for the women in the current sample.
Outcome. The major outcome for adapting to the disease of Stage IV breast cancer, in
the current study, was creating optimal quality in life in the face of a grim diagnosis. Previous
literature specific to this population, describes health related quality of life (Karamouzis, et al.,
2007; Lidgren, et al., 2007; Weinfurt, et al., 2004). Health related quality of life specifically
focuses on physical side effects. It has been shown that the multitude of physical symptoms that
come from treatments decrease quality of life (Weinfurt, et al., 2004). The data from the current
study does support previous research that body deterioration from side effects takes away from
quality in life. Women in the current study, however, not only described the past and current
physical ailments from treatments, but also fear of the future. Overall, the sample of 10 women
were in relatively good physical condition and were able to function at a moderately high level
(take care of daily chores, get to doctors’ appointments, go out socially). Due to this, these
women described another aspect of health related quality of life; fear of future body
deterioration. Many of the women in the current sample directly expressed this fear and how
their quality of life would change in the years to come as their physical symptoms began to
worsen. This fearful anticipation of the future directly took from their quality of life.

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Quality of life was increased through having meaning in life. Relationships, faith, and
having a life purpose were utilized to create meaning in life. This coping strategy was directly
linked to increases in life quality for the sample. All participants discussed how their quality was
linked to meaning either through relationships, faith and/or creating a life purpose.
Relationship between life and death. The Relational Understanding of Life and Death
(Wright, 2003) describes how men and women who were at the end of life create a relationship
with the idea of life and death. Wright describes six different relationships that can occur (see
Table 1.1), but also states that these are not limited and that simply a relationship does occur.
Within the current study, life and death were categorized within the Stage IV specific
characteristics of mortality and reality. Women within the sample described these two
characteristics, not in terms of positive or negative, but more matter of fact and as part of their
identity and their daily life. Many women discussed the feeling of living with mortality or as if
they were fully aware that life was on a count down. The fact that these women were actively
fighting a disease that was slowly killing their bodies became the basis for their narrative.
Mortality was also accompanied by the reality of their disease. These women are a dying
minority in a majority culture that focuses on survival and cure. These two factors play an
important role in the relationship that is then created with life and death. The current study does
support Wright’s theory and a relationship does emerge, but it is more of an identity with self,
than a relationship with an outside concept. In regards to the six, highlighted relationships, the
women in the current study experienced a combination of them. Wright describes seizing the
death, seizing the day, life and death transformed, and waiting for death. These relationships
include the creation of new found interest in one’s death, developing a new found meaning in
life, defining dying as a journey and accepting that death is coming, respectively. Based on the
139

current study, the women experience all of these. The relationship that women with Stage IV
breast cancer have with life and death is much more complex than one distinctly defined
relationship, but is a combination of many ways to examine life and death. It is for this reason
that the women in this study speak of life and death as more of an identity than a relationship. It
is not something outside of themselves that they can turn away from or that they can ignore, it is
a part of every moment in their lives.
Conceptual Model
Throughout the narratives, the concept of living a quality life was described. To better
understand how women with Stage IV breast cancer create quality in their lives a conceptual
model is presented (see Figure 5.1). The model addresses the research question and describes the
factors that increase and decrease quality in life. Relationships, Life Purpose and Faith are the
three factors that help to create meaning and give meaning to life for the women within the
sample. Familial relationships and friend/community relationships helped many of the women to
cope with their disease. This creation of meaning is then the key factor that adds to quality.
Having strong relationships gave women a sense of love and caring giving their lives meaning.
Life purpose was defined through being of service to others, contributing to society and being
active. Women found ways to feel purposeful in their lives despite their illness and this gave
them a sense that there was meaning to their life. Faith was the third way that women created
meaning. Faith and spirituality gave women a way to make meaning of their illness and meaning
of their mortality. It helped women to have some understanding that there was a reason for their
suffering and other women a way to make sense out of their inevitable death. Through
relationships, faith, and life purpose these women created meaning in their experience which was
directly linked to the quality within their lives.
140

The participants described those aspects of life that were linked to increasing quality but
also described the factors that took away from their quality. Financial struggles (vocational) and
body deterioration (physical) are the two factors that take away from having quality in life. These
two factors are connected in that the deterioration of the body plays a role in a woman’s ability to
work, keep her job, and the decisions around retirement/stopping work. The loss of work issue
created additional stress around health insurance, particularly if they were not married with a
single income. Additionally, the fear of future deterioration was a significant stressor and was
commonly discussed as an aspect of the experience that drew from having a quality life.
Three additional themes are also represented in the model; personal characteristics, Stage
IV specific characteristics, and needs. Personal characteristics influenced the entire model, and
all themes within it. Past breast cancer diagnosis, experience with a terminal illness, and age/life
stage played a role in all themes such as the types of relationships they had, the meanings they
made, how they viewed mortality and reality, where they were financially in life, how they saw
their bodies, and what they needed. These personal characteristics influenced each woman’s
view on her life as a whole and the lens in which she examined all aspects of her circumstance.
Thus, within the conceptual map, the personal characteristics are seen as having influence on the
entire system.
The Stage IV specific themes including mortality and reality, did not seem to add to, nor
take from, the quality within life, but actually cut through the process of creating quality. The
women described their thoughts of mortality and the reality of their Stage IV circumstance as a
part of their identity. Thoughts regarding death were such a strong part of how they viewed their
lives that they identified with them. The descriptions created a sense of living with mortality as
opposed to fighting against it. These women did not have the luxury to fight against their
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mortality and survive, so in turn they learned to live with it, accept it, and utilize it for
preparation and as a lens for how they would view their lives. This was similar for the reality of
their incurable breast cancer. Within the conceptual map, Stage IV specific characteristics are
above the creation or destruction of quality of life and are described as how they define life. Life
for these women was described with an identity of living with mortality and with an incurable
form of breast cancer. Acceptance was a key aspect of this. The women within the sample, as has
been described, all held a level of acceptance of their situation. Accepting their mortality and the
reality of their disease was a way that they then viewed their life including all themes and
theoretical tenets.
Throughout the discussions of their lived experiences with Stage IV breast cancer, two
distinctive needs emerged. First, all women described a need for connecting with other women
who suffer from the same disease – not just breast cancer but rather stage IV breast cancer. This
description did not always come in the form of a support group. Some women were not
interested in support groups or had previous negative experiences in them. Others were currently
taking part in a support group and enjoyed the ability to connect in that way. Those who did not
partake in support groups did describe either utilizing blogs or seeking out friends and neighbors
who had had a similar diagnosis. Overall, the women spoke of a need to simply have the means
to speak with other women in the same situation. Specifically, these women wanted to talk to
others with Stage IV breast cancer as the specific characteristics of their diagnosis created too
many differences with women with curable stages of breast cancer. Each woman spoke of
needing a way to contact and connect with other women in their situation early in their diagnosis.
This was commonly seen as the time of greatest need for support from others who were
experiencing the same situation.
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The second need that emerged was the need for education. The women in this sample
each individually described the breadth of information that they needed to gather in order to
understand their cancer. The amount of time that each women spent researching treatments, side
effects, test results, new experimental treatments, health insurance policies, medical bills, and the
like, was described as overwhelming. When the women were asked about needs that they have or
have had throughout their experience, the majority of women described needing help with
finding information. They described a need for someone, or some resource, to point them in the
right direction, as opposed to wasting valuable time and energy. The majority of the women in
the sample spent a great deal of time, on their own, researching and trying to understand what
was happening with their bodies, insurance and bills. The commonality of personal information
gather has been assessed in previous research. For example, a sample of 56 women at one breast
cancer care center were assessed in their internet usage for information regarding their diagnosis,
treatments, symptoms etc. (Nguyen & Ingledew, 2013). It was found that 71% of the sample
utilized internet resources for information regarding their breast cancer. Internet based research
was also common in the current sample, however women spoke to the difficulty in the process of
finding accurate and reliable information. The usefulness of internet resources needs to be
examined to help in the creation of specified web-based resources for this population.
Information is also needed from the cancer centers where these women visit their
oncologists and receive their treatments. Currently, some breast cancer care centers are including
specific patient education services, however, the efficacy of these services is just beginning to be
examined. One study assessed the Breast Care Center at the University of California San
Franscisco (Danesh, Belkora, Volz, & Rugo, 2014). This facility has in place a Decision
Supportive Services department specifically to help address the informational needs of their
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breast cancer patients. This study examined the lists of questions of 59 women with metastatic
breast cancer and how participants felt these questions were answered by oncologists. Through
the examination of consultation notes and question lists it was found that only 37% of questions
regarding prognosis were answered by physicians, 66% of quality of life questions were
addressed, 81% of symptom management questions were addressed and 79% of clinical trial
questions were answered (Danesh, et al.). This data shows that information on prognosis and
quality of life needs were the most unanswered questions for this sample. However, the Decision
Supportive Services department does implement not only oncologist consultations, but also
informational videos and pamphlets for the women as supplementary informational resources.
This specific type of service needs to be included in long term care for women with Stage IV
breast cancer and more importantly needs to be evaluated for efficacy in order to meet the needs
of these women. Resources such as this could help to address the need for education that was
discussed within the current sample.

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Figure 5.1: Conceptual Map of Quality of Life

Individual
Characteristics
Past Cancer
Past Illness
Age

Relationships
Family
Friends
Community

Life
Purpose
Service
Activity

Faith
Religion
Spirituality

Making
Meaning

Stage

Creating a Quality Life

Mortality

Specific
Reality

Financial
Struggle
Leaving
Work
Health
Insurance

Body
Deterioration
Treatment Side
Effects
Fear of Future
Deterioration
Needs
Connection
Education

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Clinical Implications
The clinical implication for the current study are therapeutic and educational. The lived
experiences of women with Stage IV breast cancer are unique and have not been widely
researched in the current capacity. Understanding life quality, what adds to and takes away from
it, and the needs of this population is of the utmost importance in the creation and reorganization
of current and future resources.
Couple and family therapy/Medical family therapy. One area of the lived experience
of Stage IV breast cancer that was not explored in detail was the systemic nature of the disease.
Many of the women within the current sample briefly discussed how their cancer had negatively
affected their families, describing emotional responses such as devastation, sadness, denial, and
the like. These responses to the cancer were common among the population due to the severity of
the disease and the reality of the situation that these women were going to die sooner than
expected. Family members, in particular, had difficult reactions to their loved one slowly dying.
However, not one of the women in this study utilized therapy or mental health resources for their
families. Many reported not considering finding help for their families or not knowing that
family therapy was an option. Additionally, only two women spoke of going to a therapist to
help with the emotions of their cancer and neither experience was described as highly beneficial.
This is a call to action for individuals within the mental health field who are specially trained in
systems thinking and relational therapy. The women within this sample who did not utilize
mental health resources were not aware of any near them, reported them to be too expensive or
had never thought about utilizing them as an option. This is a population that is living with a
complex set of challenging and demanding circumstances. Women who are living with this
incurable disease are struggling with body deterioration, fears of the future, stress, and the like.
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These women, however, report receiving support from their communities, friends and family.
However, the unknown aspect of this disease is whether or not family members are receiving the
same level of support. It is clear that family members are having strong emotional reactions, it is
not clear how they are handling these emotions and if they are communicating openly about
them. This is an area where relationally trained therapists are needed. More specifically,
relational therapists with a medical knowledge of this disease would be beneficial for this
population. Medical family therapists could be utilized at locations convenient to doctors’
appointments or treatments for the women and they would have a unique understanding of the
medical stress of the disease but also have the ability to help with the relational difficulties that
these women experience. Based on the current sample, mental health resources, specifically
those who are trained in systems, are not a known resource. It is up to the field of couple and
family therapy and medical family therapy to understand the dynamics of this illness and to
present themselves as a resource to cancer centers, doctors’ offices, nursing staff, and the like.
Group therapy. An additional clinical implication for this population is the creation and
implementation of specialized group therapies and an increase on availability of support groups.
The women with in the current study were not in consensus about the benefit of supportive group
resources. Few had been involved in a specialized support group and many stated that they had
negative experiences with them in the past. The negative experiences came from groups that
were for all stages of breast cancer or from past experiences with other types of support groups.
However, each participant discussed a need for connection with others that had a Stage IV
diagnosis. This leads to a call to action for therapists trained in group therapy and with a medical
knowledge to be more active in supportive group resources for this population. Medical family
therapists would be an ideal field for these groups to arise from. The one active support group
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within the Atlanta, GA area that was discussed within the interviews was successful and the
women spoke highly of the connection that they were able to build with each other. Death of
group members was, however, a realistic and difficult part of this group experience. There is a
need for these types of groups to be organized and run by professionals who possess the
knowledge to manage groups that will include medical knowledge, relationships, and grief and
loss. Few of these groups exist within the areas that the participants lived and all spoke of a need
for connection. This is an area of growth for the medical and therapeutic field.
The distinct systems training and theoretical orientations in the field of couple and family
therapy/medical family therapy lend itself to be uniquely qualified to handle the complexity of
how this disease affects the individual woman, the individual members of the family and the
connections between each family member. Couple and family therapists are trained in working
with whole family systems and would have the ability to value each members experience while
working with the entire family to stay connected and help to cultivate a quality family life.
Education. The second area that has clinical implication is within education. One of the
commonly described needs of this sample was the need for organization and access to
information. When asked about what this sample needed or currently needs, overwhelmingly the
participants spoke of the difficulty with gaining the knowledge to navigate the disease. There is a
lack of organization of information and confusion about where to find it. As has been previously
stated, the amount of information that these women need to learn and understand is intimidating.
There is a need to have staff (i.e. social workers, medical family therapists) who have to ability
to help navigate the information that is needed. Although each diagnosis is different and will
bring with it individualized treatments, physical and psychological symptomology, it would be
beneficial for these women to have an individual or central resource to contact that would help to
148

point them in the right direction. Whether it is giving them a list of websites to visit, books to
read or other women to connect to, there needs to be more organization for how these women are
receiving information. This is a call to action for medical offices and cancer centers to include
staff who can educate these women and help them to obtain the right resources. It is essential that
information be made available to these women. The majority of the women within this study had
spent many hours researching, studying, and searching for information on the internet. This time
could be shortened if there were a larger scale resource with a collection of information, and/or a
person that could be contacted to help them gain the best and most accurate information possible.
Limitations
The current study has three limitations. First, this study was limited by a small sample
size. Although saturation of the experience was met, this was a difficult population to gain access
to and thus this study is limited to the description of ten women’s experience and not
generalizable beyond this sample. Due to the difficulty in access, the interviews were also
limited to phone contact. Eight of the 10 women were interviewed over the phone. This was due
to location of the women and physical inability to meet face to face. Although the phone
interviews were rich in information, there may have been more emotional expression if the
researcher would have been able to meet the women face to face.
Second, the population of women that chose to participate within this study were all in
relatively good physical condition. Although the women had been living with the disease for an
average of 6 years, no individual women was near the end of life. All the women were
experiencing success in treatments and still maintained a functional daily life. This created
difficulty for the women to project how their quality of life would be in the future when they are

149

suffering from more physical ailments and treatments are not as successful. Thus, this
description is limited to a sample of women whose treatments were working to slow the
progression of their disease. As many women alluded, quality of life was expected to change as
the disease progressed further. Not having a broad sample of women at different progressions of
the disease limits the ability to understand how the experience and life quality changes over time.
The third limitation is reflected in the lack of systemic focus. The interviews were
individually focused and more specifics regarding family member reactions, relationship
dynamics and communication within the family is needed to create a deeper understanding of the
experience of Stage IV breast cancer. Although the current study is the first of its kind and has
produced a rich understanding of the lived experience of Stage IV breast cancer, it is limited in
the ability to speak to the systemic and relational aspects of the disease.
Future Research
The future research for this topic is directly linked to the limitations of this study. First,
future research needs to broaden the search for women with differing progression of this disease.
Although it will be challenging to gain participation from women towards the end of life,
perhaps looking into hospice facilities could be an option. It is important to understand the future
concerns of this population and how quality of life is achieved when activity and physical ability
is limited. It is hypothesized that the process of making meaning will change and meaning may
come from different sources than those who are still physically able to function.
Future research also need to focus on the systemic and relational aspect of this disease.
As has been shown, there are many emotional reactions of family members, however, due to the
limitation of this study, little is understood regarding the communication and familial processing
150

of this incurable disease. The fact that women can live many years with this disease also lends
itself to a need for understanding how families move through life transitions while treating Stage
IV breast cancer. Many women in the current study are watching their children graduate and
sending them to college, while negotiating different phases of their marriages. These dynamics
are all experienced with the unique lens of mortality and the reality of the Stage IV disease. How
this influences family function is a part of the experience that needs to be examined.
Conclusion
Women with Stage IV breast cancer are courageous and strong. They are living long
lives, despite their illness and are doing so with a high quality of life. They live their lives from
one treatment to the next and in a timespan that lasts from one PET scan to the next. Has the
cancer spread? Is the tumor larger? Will it be found in a different part of my body? These are
questions that these women ask with each doctors’ appointment and with each passing year.
However, these women are also creating a life that is worth living. Through family, faith, and
finding a purpose to their lives, these women are showing strength that few can understand. This
is not a sickly group of women struggling to wake up each morning. This is a minority group of
women living in a dominant culture where they are not understood and there are limited
resources for them. However, this is a group of women that strives to make the best out of each
day and fill their lives with beauty, love, and enjoyment, despite the many hardships they face.
This is a little known population that has been looked down upon by the larger culture, but that
has shown great resiliency. It has been my personal pleasure to have met these women and had
the privilege of telling their stories. It has inspired me to continue the future research to further
understand this experience and to create better resources for this population.

151

APPENDICES

152

APPENDIX A

Table 1A: Stage Designation for Breast Cancer

Stage
0:

I:

IIA:

Primary Tumor (T)

Regional Lymph
Nodes (N)
No regional lymph
node metastasis.

Distant Metastasis
(M)
No distant metastasis.

No regional lymph
node metastasis.

No distant metastasis.

No distant metastasis.

Tumor more than
0.1cm but not more
than 0.5 cm.
Tumor more than

Metastasis in
movable ipsilateral
axillary lymph nodes.
Metastasis in
movable ipsilateral
axillary lymph nodes.
No regional lymph

1cm but not more

node metastasis.

Carcinoma present
but at primary
location.
Tumor more than
0.1cm but not more
than 0.5 cm.
No evidence of
primary tumor.

No distant metastasis.

No distant metastasis.

than 2cm
IIB:

Tumor more than
2cm but not more
than 5cm
Tumor more than
5cm

Metastasis in
movable ipsilateral
axillary lymph nodes.
No regional lymph

No distant metastasis.

No distant metastasis.

node metastasis.
IIIA:

No evidence of
primary tumor.

Tumor more than
0.1cm but not more
than 0.5 cm.

Metastases in
ipsilateral axillary
lymph nodes fixed or
in clinically apparent
internal mammary
nodes.
Metastases in
ipsilateral axillary
lymph nodes fixed or
in clinically apparent
internal mammary
nodes.
153

No distant metastasis.

No distant metastasis.

Table 1A (cont’d)

Tumor more than
2cm but not more
than 5cm.

IIIB:

IIIC:

Metastases in
ipsilateral axillary
lymph nodes fixed or
in clinically apparent
internal mammary
nodes.
Tumor more than
Metastasis in
5cm.
movable ipsilateral
axillary lymph nodes.
Tumor more than
Metastases in
5cm.
ipsilateral axillary
lymph nodes fixed or
in clinically apparent
internal mammary
nodes.
Tumor of any size
No regional lymph
with direct extensions node metastasis.
to chest wall or skin.
Tumor of any size
Metastasis in
with direct extensions movable ipsilateral
to chest wall or skin. axillary lymph nodes.
Tumor of any size
Metastases in
with direct extensions ipsilateral axillary
to chest wall or skin. lymph nodes fixed or
in clinically apparent
internal mammary
nodes.
Any T
Metastasis in
ipsilateral
infraclavicular lymph
node(s), or in
clinically apparent
ipsilateral internal
mammary lymph
node(s) and in the
presence of clinically
evident axillary
lymph node
metastasis; or
metastasis in
ipsilateral
supraclavicular lymph
node(s) with or
154

No distant metastasis.

No distant metastasis.

No distant metastasis.

No distant metastasis.

No distant metastasis.

No distant metastasis.

No distant metastasis.

Table 1A (cont’d)

IV:

Any T

without axillary or
internal mammary
lymph node
involvement.
Any N

Distant metastasis.

(Singletary, Allred, Ashley, Bassett, Berry, Bland, Borgen, Clark, Edge, Hayes, Hughes, Hutter,
Marrow, Page, Recht, Theriault, Thor, Weaver, Weiand, & Greene, 2003).

155

APPENDIX B

WOMEN WITH METASTATIC BREAST CANCER
WE NEED YOUR HELP!
This research study will explore the experience of women with metastatic breast
cancer and the needs of this population of women. The invaluable information that
YOU can give will help to inform future and current psychosocial interventions to
help benefit women in your situation.
Please help to inform interventions for women with metastatic breast cancer.
Your experience is truly important!
You are eligible if:
 You have a current diagnosis of Stage IV, metastatic breast cancer.
 You are proficient in English.
Participation includes:
 A 1-2 hour individual interview.
 A two hour focus group with 6-8 other women with a Stage IV diagnosis.

PARTICIPANTS WILL RECEIVE A $25 VISA GIFT CARD

156

If you are interested or would like to know more about this study please
contact
Karly J. Downs, M.A.,
by telephone at 678-800-6810
or by email at karlydowns.research@gmail.com

Thank you for your consideration in helping women with metastatic breast cancer.

157

APPENDIX C

Research Participant Informed Consent

Introduction
Karly J. Downs, M.A., Ph.D candidate in Couple and Family Therapy at Michigan State
University is conducting a study entitled, Understanding the Experiences of Stage IV Breast
Cancer: A Qualitative Inquiry of Women with a Stage IV Diagnosis. This study focuses on
understanding the experience and needs of women with metastatic breast cancer.
Researchers are required to provide a consent form to inform you about the study, to explain risk
and benefits of participation and to empower you to make an informed decision. You should feel
free to ask the researcher any questions you may have.
Purpose of Research
You have volunteered as someone who may be willing to participate in this important research.
Your experience with breast cancer will be greatly beneficial to the breast cancer literature and
will help to inform future interventions specific to a population of women with metastatic breast
cancer. Your knowledge will lead to further understanding of the specific needs of women with
metastatic breast cancer and will be used to inform current and future psychosocial interventions.
Your participation is completely voluntary. Declining to participate in this research project will
not affect you in any way.

158

Procedures and Participation
Participation involves two interviews. First you will be asked to participate in a 1-2 hour
individual interview to discuss your experience with metastatic breast cancer. Second you will be
asked to participate in a 2 hour focus group including yourself and 6-8 other women who share a
diagnosis of metastatic breast cancer. This focus group will explore the needs of women with
metastatic breast cancer and their thoughts on and experiences with psychosocial interventions.
By agreeing to participate in this study, you will be expected to complete the following:






Sign this informed consent form.
Fill out a demographic form.
Schedule and participate in a 90 minute to 120 minute interview and schedule and
participate in a 120 minute focus group.
Agree the interview and focus group will be audio tape recorded.
Understand you will receive a monetary incentive of a $25 dollar Visa gift card at the
focus group interview.

It is important that you are aware that participation in this research is voluntary and you may stop
the interview or decline participation in the focus group at any time. The location of the
interview will be your choice and the focus group will be in private location.
I agree to allow audio taping of the interview.
_______Yes _________No

Initials____________

Risks and Benefits
There are minimal risks for participation in this study. There is potential for discomfort
associated with providing information about your experience with metastatic breast cancer. It is
possible you may be asked about sensitive issues that could evoke negative responses. If
additional support is needed, the researcher will provide you with the names of local mental
health resources.

159

The benefits to you for participating in this study are indirect, as the information provided by
you will benefit the overall population of women with metastatic breast cancer in gaining help
and resources that meet the specific needs of this population.
Women in your situation will benefit from the knowledge that you contribute, as this study will
be published to inform health care professionals to better serve women with metastatic breast
cancer.
YOU MAY REFUSE TO CONTINUE YOUR PARTICIPATION IN THIS STUDY AT
ANYTIME.
Confidentiality
Your confidentiality will be protected to the maximum extent allowable by law. The individual
interview and focus group will both be audio-taped. However, reasonable and appropriate actions
will be taken to keep your information confidential. No identifying information will accompany
any materials. Names will not be used in the transcription of the interviews and focus groups.
Recordings will be marked with identification numbers and coded. All data will be stored in a
locked filing cabinet. Audio recordings will be erased after transcription is completed. The
researchers and IRB will have access to the code, but again no identifying information will be
placed on the transcriptions. The results of this study may be published or presented at
professional meetings, but the identities of all participants will remain anonymous.

160

Rights to Participate, Say No, or Withdraw
Participation in this research project is completely voluntary. You have the right to say no to
participation. You have the right to change your mind at any time and withdraw participation at
any point within the study process. You may choose not to answer specific questions. Choosing
not to participate, withdraw, or not answer specific questions, will not have negative
consequences in any way.

Compensation for Participation
You will be compensated for your participation in this study. You will receive a $25 Visa gift
card for your participation in this study that will be given at the time of the focus group
interview.

Questions Regarding Research
If you have concerns or questions about this study, such as scientific issues, how to do any part
of it, or to report an injury, please contact the researcher, Karly J. Downs.
Karly J. Downs
karlydowns.research@gmail.com
678-800-6810

161

Questions about your Rights as a Research Participant
If you have questions regarding your rights as a participant in a research project, would like to
obtain information or offer input, or would like to register a complaint about this study, you may
contact, anonymously if you wish, Michigan State University‘s Human Research Protection
Program at 517-355-2180, Fax 517-432-4503, or email irb@msu.edu or regular mail at 207 Olds
Hall, MSU, East Lansing, MI 48842.

By signing this form, you acknowledge that your participation in this research study is
voluntary and that you agree to participate in this research.
I voluntarily agree to participate in this research study:

________________________________________________________________________
Research Participant
Date

I certify I have explained the research to _______________________________________and
believe she understands and has agreed to participate freely. I agree to answer any additional
questions when they arise during the research or afterward.
_______________________________________________________________________
Signature of Researcher
Date
You will be given a copy of this form to keep.

162

APPENDIX D
Participant Demographic Information
Participant Number:___________________
Age:_______________ DOB (Month/Year):_________________________
Date of Diagnosis (Month/Year):____________________________________
Please list all immediate family members below (first names only):
EXAMPLE: BILL__ Relation:HUSBAND_____

Age:__51______

_________________ Relation:________________ Age:___________
_________________ Relation:________________ Age:___________
_________________ Relation:________________ Age:___________
_________________ Relation:________________ Age:___________
_________________ Relation:________________ Age:___________
What is your employment status (please circle)?
Employed full time

Employed part-time

Retired

Unemployed

Volunteer

Other __________________________________________________
Where are/were you employed?____________________________________________________
Highest level of education obtained? ________________________________________________
Race:_________________________________________________________
Ethnicity:______________________________________________________
Spiritual/Religious
Affiliation:_______________________________________________________

163

APPENDIX E
Individual Interview Guide

Introductory Statement:

Hello and thank you for meeting me for this interview today and agreeing to be a part of
the research that I am conducting on women with stage IV breast cancer. I appreciate your
willingness to take time out of your schedule to give insight into this topic. Your experience with
breast cancer is invaluable and I encourage you to be open and honest with your answers.
The interview will consist of several questions that I would ask you to answer based on
your experiences. As the interview unfolds I may ask further clarifying questions. The interview
will last anywhere from two to two and a half hours. Please let me know if you have any
questions throughout the interview. If at any time you wish to stop the interview please let me
know. Your participation is voluntary. Thank you again for your participation.

Question #1
What has been your experience with cancer from diagnosis to today?
Question #2
What have been the most significant milestones throughout your cancer experience?
Probes:


Why were these significant for you?
164

Question #3
How have your past experiences (e.g. your childhood, values, life experiences), prior to your
diagnosis, influenced your cancer experience?
Question #4
Tell me about the things in your [environment, culture, community, family], that affected your
cancer experience.
Question #5
How did you react to your diagnosis?
Question #6
Have you come to terms with your diagnosis?
Probe:


If yes, how? If no, describe what you are struggling with?

Question #7
How did you adapt to the physical symptoms of the disease and the effects from treatments?
Question #8
Describe your emotional reactions to the diagnosis?
Question #9
What have your psychological responses been to the diagnosis?
165

Probe:


How have you overcome these?

Question #10
How have family, friends and community supports contributed to your experience with your
illness?
Question #11
What role has spirituality played in living with cancer?
Question #12
How has your work and recreational life been effected by your cancer?
Probe:


How have you responded to this?

Question #13
What have you done individually to cope with your disease?
Question #14
Describe your quality of life.
Question #15
How would you rate your life quality on a scale from 1-10?
Probe:
166



What would need to be present in your life to make it better?

Question #16
How do you create balance in your life, personally, socially, spiritually, etc.?

Question #17
What are your thoughts and feelings regarding life and death?
Probe:


Has meaning in life changed for you?



Have your thoughts on death changed?

Question #18
What are the most important needs that you have had in your experience with breast cancer?
Question #19
When you received your diagnosis, what did you wish you knew then that has helped you along
the way to overcome the challenge of cancer?
Question #20
Have you utilized mental health or psychosocial resources?
If “yes”: What psychosocial interventions have you participated in (e.g. therapy, groups, family
therapy, consultation with religious figures)?
If “no”: Why not?
167

Question #21
What have you found to be most beneficial from the interventions you participated in? OR What
types of resources do you think would be beneficial to participate in?
Question #22
Please think about your quality of life. Is there anything that you wish you had or that you
currently have that could or currently does increase the quality of your life?

168

APPENDIX F

Confidentiality Agreement

I _____________________ understand that information and identities of all participants will be
kept strictly confidential and will not be released to anyone. Throughout the process of
transcription, all audio and word documents will be kept in a secure location where only I have
access. No outside persons will hear nor read the data being transcribed. Once transcriptions
are completed all audio and word files will be given to Karly J. Downs and subsequently deleted
from my possession. By signing this document I agree to all confidentiality guidelines and
understand my role in keeping the data secure.

__________________________________

___________________________

Signature

Date

169

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170

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