Breast Cancer

Daughters Tell Their Stories

Julianne S Oktay, J Dianne Garner

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781135418250
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

I will always and forever feel I have a 'hole' in my life where my mother once existed.I think, when you have to think about the fact you might have to take care of your parents someday and juggle kids at the same timeIt's a scary proposition.We had open communication during and before the breast cancer. But then after the breast cancer, I was often afraid to bring things up, in trying to protect Mom. This insightful book tells the stories of women whose mothers had breast cancer. It uses their own voices to express the common fears and expectations of daughters in the periods before and during their mothers' illnesses, involving genetic risks, death and dying, and changes in their relationships. The case studies, tables and figures, and two appendices will benefit health professionals and counselors, while the poignant narratives will help mothers and daughters better understand their experiences with breast cancer. I was kind of surprised to be alive and free of cancer at age 42, when at this point my mother was crippled by metastases. When I get to be 43the age at which my mother died, or maybe when I get to 44it's like, 'what do I do?' I have this life that I didn't expect to have. Breast Cancer: Daughters Tell Their Stories presents the results of a qualitative, grounded theory study of breast cancer survivors, providing in-depth information about an aspect of breast cancer that has been previously overlooked. The book examines the daughters' experiences through four phasesthe period prior to mother's illness, the period during mother's illness and treatment, the period following mother's death (if mother dies), and the long-term impact. From this study, recommendations are compiled for providing or improving services for tomorrow's daughters. The radical mastectomy left her scarred and disfigured below her nightgown. It was bruised and nasty looking. That was kind of scary. I think that has terrified me since. Sometimes I'll have pains in my left breast and that's what I visualize. It's terrifying.I'm not really obsessed about dying of cancer. I'm more along the line of, 'If this is going to happen to me, and there's a chance it's going to, I'm gonna survive. I'm not going to die from it. From an empathetic perspective, this book reveals how many daughters react to and deal with their mothers' diagnoses, depending on their age and family situation at the time of their mothers' illnesses. It shows how daughters can gain a more accurate idea of their level of risk by providing educational materials and developing new strategies for communication. It also helps breast cancer survivors see how their illnesses can shape their daughters' future outlook, offering new inspiration for resolving and preventing family crises.

Chapter 1

Background and Introduction

Breast cancer is a major killer of American women, with approximately 212,000 diagnosed and 40,000 dying every year (Jemal et al., 2003). Although currently no cure or prevention has been found for the disease, improved survival rates have resulted in increasing numbers of breast cancer survivors. The National Cancer Institute (NCI) estimated recently that there were 8.9 million cancer survivors in the United States. About one-third of the female cancer survivors are breast cancer survivors (NCI, 2002). Many services are now available for breast cancer survivors, including individual counseling, support groups, educational programs, and mentor programs. However, the needs of another group of survivors have been largely ignored—the family members of women with breast cancer. Although the term breast cancer survivor is generally used to refer to living women who have been diagnosed with breast cancer, family members are also survivors, whether they have a mother, wife, sister, or daughter who has been diagnosed with the disease. Little research has been done on the impact of breast cancer on these “survivors,” and few services are available to them.

The impact of breast cancer is most profound in one group of these other breast cancer survivors: daughters. The daughters are a particularly important group to study for several reasons. Daughters not only have a parent of the same sex with a serious illness, but also may lose that parent to a female-related illness. Those who lose a parent when they are young are generally thought to be at risk for long-term psychological consequences. However, little research has been done focusing specifically on daughters who lose their mothers; consequently, little is known about their experiences.

It has long been known that there is a genetic aspect to breast cancer, but the discovery (in 1994) of mutations in two genes (BRCA1 and BRCA2) offered new hope for identification of at-risk women, and eventual prevention or successful treatment. This new knowledge focuses attention on daughters who are at risk of inheriting the disease from their mothers. Although the genetic form of breast cancer applies to only a small proportion of breast cancer diagnoses (5 to 10 percent), daughters in families that carry these mutations have a higher than normal probability of getting breast cancer in their lifetimes than do other women. Because of their increased risk, daughters are prime candidates for the genetic counseling and testing increasingly available for this disease. An awareness of their experience with their mothers’ illness is key to understanding their future needs in the genetic counseling and testing situation.

Another important reason to study daughters is that the mother-daughter relationship is both highly complex and extremely important to women. A better understanding of the mother-daughter relationship and how it is affected by breast cancer is important for providing better services to women who are diagnosed with the disease, to their daughters, and to other family members.

Previous Research

Research on daughters of women with breast cancer is quite limited, but research on the impact of cancer on the family is more readily available. The literature increasingly recognizes that serious illnesses affect the entire family and not just the member who is ill (Rolland, 1994). Studies of families during the illness show that “a significant number of families are seen to function more poorly than other families in the same community” (Lederberg, 1998, p. 981). These studies also find that psychological problems, such as anxiety and depression, are common in family members of cancer patients (Ell et al., 1988; Kissane et al., 1994; Northouse, 1984). Many studies point to the importance of open communication in the family in preventing psychological problems and family destabilization (Cohen, Dizenhuz, and Winget, 1977). Studies on bereavement also point to the long-term impact of cancer on family members (Kissane et al., 1994; Kissane, Bloch, Onghena, et al., 1996).

Studies of cancer’s impact on specific family members have concentrated on two groups: spouses and young children of cancer patients. Studies of young children show that “they show vegetative disturbances, psychological symptoms, acting-out behaviors, and school problems, as well as long-term changes in cognitive performance and personality attributes, such as self-esteem” (Lederberg, 1998, p. 984). These studies also emphasize the importance of open communication (Rosenheim and Reicher, 1985). In addition, children of different ages have varying abilities to understand and cope with information about a parent’s cancer (Christ, 2000; Patenaude, 2000).

Lewis and her colleagues have done extensive research on the impact of breast cancer on the family unit (Lewis, 1996). In studies of families of newly diagnosed breast cancer patients, and those in which family members already have adapted to the cancer diagnosis, they found that the illness results in depressed mood in both parents; this affects marital adjustment, coping, and, ultimately, household functioning (Lewis and Hammond, 1992). Later research focused on the impact of a mother’s breast cancer on her young and adolescent children. Analysis showed higher levels of behavior problems, lower coping efficacy, and low self-esteem scores in these children (Armsden and Lewis, 1994), although these factors were not essentially different from those of children of women with other serious diseases. This is attributed to the impact of illness on the parents’ depressed mood and the resultant marital strain, which leads to self-absorption and inaccessibility. Lewis, who studied children of both sexes, suggests that attachment theory be used to differentiate the impacts on girls and boys.

Unfortunately, research that focuses specifically on women whose mothers had breast cancer is very limited. In a review of the literature, Wellisch, Hoffman, and Gritz wrote (1996),

A curious reality emerges if one surveys the psychological literature about the breast cancer patient and her family members. A very substantial literature now exists on the problems of the patient. A smaller but growing literature exists on the impact of breast cancer on the patient’s spouse or significant other. Where the breast cancer patient’s daughter is specifically concerned, the psychological literature becomes minuscule. This is grossly out of proportion to the potential size of this population. (p. 28)

The earliest study on daughters (Lichtman et al., 1984) found that although many mother-daughter relationships improved, breast cancer created special problems in some mother-daughter relationships. Wellisch has focused much of his research on the impact of breast cancer on daughters (Wellisch et al., 1991, 1992, 1996). While much of this research examines issues of risk and risk behavior, Wellisch has also studied psychological impact of the disease on daughters. On many mental health dimensions, Wellisch and his colleagues found little or no difference between women whose mothers had breast cancer and women not affected by breast cancer. However, they found that the following factors correlated with “psychologically high-risk” daughters: daughter’s age and mother’s survival status. This research also identified the special problems experienced by some adolescent girls when mothers have breast cancer, and established women whose mothers die when they are adolescents as most likely to experience psychological stresses later in life (Wellisch, Hoffman, and Gritz, 1996).

Overview of Study

A qualitative study was conducted to gain a better understanding of the experiences of women whose mothers had early breast cancer (under age fifty). This study focused on the younger breast cancer daughters, those whose mothers were under age fifty at their diagnosis. Several reasons for this exist. Because breast cancer strikes young women and it is a significant cause of death in young adulthood, it is sometimes forgotten that breast cancer is more common in older women. With increasing age, the prevalence of breast cancer increases. For this reason, the largest group of breast cancer daughters are women whose mothers are elderly. I chose to focus on the subset of daughters of younger mothers because the genetic forms of breast cancer are more likely in women who are diagnosed at younger ages. Daughters whose mothers were diagnosed at younger ages also are more likely to be interested in genetic testing, because they themselves will be young enough for the results to impact their reproductive decision making. (A woman who is diagnosed in her seventies is more likely to have daughters who are past childbearing age.) Another reason this study focuses on daughters of younger mothers is that loss of a mother in middle age is normative, and the experience of caring for and losing elderly parents has been extensively studied. Many services for caregivers and the bereaved are now available for women in midlife. However, having a seriously ill mother, and losing a mother, when a daughter is still a child, or a young adult, is not common. I wanted to focus my study on the youngest daughters, since they are the ones who could be expected to be most adversely affected, and for whom few services are available. Approximately 33,000 women under the age of fifty are diagnosed with breast cancer each year. About 10,000 women in this age group die (U.S. Cancer Statistics Working Group, 2003). These cases tell the stories of the women’s daughters.

This book describes the study, presents the elements of a theoretical model developed from the study, and summarizes the findings. Chapter 2 offers a description of the methodology that was used in the study. A “grounded theory” approach was used to create a theoretical model that describes the experiences of breast cancer daughters (Strauss and Corbin, 1998). The most important factors that distinguish the experience were found to be daughter’s age and mother’s outcome (death or survival). The concept of “illness phase” was also used to organize the findings. Illness phases were “family background” (period prior to the mother’s illness), “period during illness and treatment,” “period following mother’s death” (if mother died), and “long-term impact.” This framework, which is described in detail in Chapter 3, is used to organize the material in Chapters 4 through 8. Chapters 4 through 7 describe the cases of women whose mothers died, each chapter being devoted to daughters in a common age category. Chapter 8 describes the experiences of women whose mothers survived. Chapter 9 discusses the concept of risk. It identifies themes related to how breast cancer daughters think about their own risk and what they do to deal with this. In Chapter 10, the results are examined by phase of the experience, and common themes for each phase are identified. The results of the study are summarized, and recommendations are made for practice, in Chapter 11.

Background

This research is part of a fairly new perspective for medical studies, focusing on the experience of the patients and families. Traditionally, medical research has emphasized the biomedical characteristics of a disease, and not how it feels to those who have the disease. To the patient, of course, both are important. However, an overemphasis on the biomedical has led to services that are often insensitive and sometimes even ineffective. If a health practitioner is not aware of what the patient is thinking and feeling, how can he or she provide information, answer questions, facilitate decision making, and help a patient or family member cope with the disease? As chronic illnesses have become predominant in the developed world, patient behavior has become increasingly important in both the prevention and successful treatment of disease. In the case of breast cancer, women are encouraged to conduct monthly self-exams, have regular mammograms, follow up on suspicious findings, eat properly, exercise regularly, and handle stress well. These behaviors are ideally based on a view of disease that is compatible with the biomedical view. Recently, we have learned that even when the biomedical cause of disease is known and the behaviors to prevent it are well understood, as is the case for heart disease (not so for breast cancer, unfortunately), most people do not do what is recommended to prevent the disease. Teenagers (and adults) still start smoking (because it is “cool”), fail to use condoms to prevent human immunodeficiency virus (HIV) infection, and drive while intoxicated. Adults who smoke do not quit, even when they are fully aware of the dangers (e.g., lung cancer, heart disease). (Some people with advanced stages of emphysema and lung cancer continue to smoke.) It is increasingly recognized that to successfully prevent and manage disease, the patient experience must be taken into consideration. The research described in this book is compatible with a biopsychosocial model of illness (Rolland, 1994). This view suggests that an increased understanding of the experience of breast cancer daughters will ultimately lead to better medical care for all women.

This study is a direct descendent of a previous study that I conducted (with Carolyn A. Walter) on the experience of women who have breast cancer (Oktay and Walter, 1991). Carolyn and I set out to examine how women’s life-course development impacted on the breast cancer experience. We interviewed about forty women who ranged in age from their twenties to their late eighties at the time of their breast cancer diagnosis. We found strong support for issues of life-course development as an important (and often overlooked) factor in how women experienced breast cancer and in how it impacted their lives, and also found some unexpected consistencies across the age span. It was clear from this study that the mother-daughter aspects of the illness were important for all age groups in our study:

We found evidence of conflict between mothers and daughters throughout the life course, with breast cancer serving to complicate this already highly complex relationship further. … In many cases, a kind of power struggle seemed to be going on, with both parties wanting both nurturance and independence, or control. … Guilt concerning the possible genetic nature of the disease often made direct communication between mothers and daughters even more difficult. (Oktay and Walter, p. 196)

Those women with breast cancer who were mothers were especially concerned about the possible impact of the disease on their children. If they had young children, they were terrified about what might happen to the children if they died. If they had daughters, they worried about passing on a genetic link to the disease. If their mothers were living, they focused on how their disease might affect them, or on what they expected from them regarding care and nurturing. The women handled these issues in different ways. Some tried to hide the diagnosis from their children and/or mothers and to carry on as normally as possible. Some made plans for children, in case of their death. Regardless of age, issues such as maternal guilt, poor communication, and mutual protection bore directly on the quality of life of both the cancer survivors and their daughters.

My interest in studying these issues further was sparked by the National Breast Cancer Coalition (NBCC). In the early 1990s, this group of breast cancer activists identified a set of priorities, called “The National Action Plan on Breast Cancer.” They were successful in getting the National Institutes of Health to supplement the traditional breast cancer research agenda and to provide some funding for research on these issues. One of the priorities dealt with the psychosocial aspects of the new genetic discoveries in breast cancer. In response to the call for proposals of the National Breast Cancer Coalition and the National Cancer Institute (NCI), I developed a proposal to do a qualitative study on daughters, focusing broadly on their experiences and not only on risk. The value of this type of study is precisely that it does not define the question narrowly in advance. This leaves the researcher open to explore the issues raised by the women themselves. In contrast, most research, especially funded research, sets up a very specific set of research hypotheses based on previously developed research and theory. These hypotheses are then tested, usually based on data from very specific questions on a structured questionnaire. This type of research (quantitative research) is valuable when there are well-substantiated theories, strong prior research, and good instruments that measure what is being studied. The women of the NBCC convinced the federal research establishment to listen to survivors and advocates; the NCI funding makes it possible to study the experiences of the daughters, whose voices had not yet been heard.

This research also has roots in the feminist concept that an important goal of research is to give voice to women (Reinharz, 1992). Gilligan (1982a,b) and Miller (1986) have emphasized the importance of research that is based on women telling their life stories. Other feminist researchers have argued that women’s voices have often been silenced, leading to the further oppression of women (Belenky et al., 1986). By listening to these stories, and allowing daughters to use their own voices, it is hoped that this research empowers them, and at the same time, informs others (professionals, policymakers, etc.) who can use this knowledge to provide better services. Another aspect of both feminist and qualitative research is the recognition that I am a real embodied person, not an objective, national, uninvolved scientist. This book necessarily reflects my own voice (not just the voices of the daughters) and my own experiences. Therefore, I use my own voice to bring in my own experience as I reflect on the experiences of daughters. I hope that this will allow the reader to assess the validity of my conclusions, and to separate my voice from the voices of the women I studied.

It is important to note that this study does not judge the daughters, nor does it attest to the accuracy of the material. No indication was evident that these women were trying to deceive us, nor did they have any reason to do so. Also, no attempt was made to identify psychological processes, such as denial or projection, or inaccuracies in knowledge. The goal was to present the perspectives of the daughters and to allow them to speak in their own voices. When Hope Edelman (1994) published her influential book, Motherless Daughters: The Legacy of Loss, some reviewers said that the women sounded “whiny” and suggested that they “get over it!” However, such comments are judgmental and suggest that there is a correct way to react to a life tragedy such as the early loss of a mother. There isn’t. What is important is the way wo...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• About the Author
• Table of Contents
• Foreword
• Acknowledgments
• Chapter 1. Background and Introduction
• Chapter 2. How the Study Was Done
• Chapter 3. A Daughter’s Experience of Her Mother’s Breast Cancer: Theoretical Model
• Chapter 4. Experience of Young Daughters When Mothers Die from Breast Cancer
• Chapter 5. Experience of Young Adolescent Daughters When Mothers Die from Breast Cancer
• Chapter 6. Experience of Late Adolescent Daughters When Mothers Die from Breast Cancer
• Chapter 7. Experience of Young Adult Daughters When Mothers Die from Breast Cancer
• Chapter 8. Experience of Daughters Whose Mothers Survive Breast Cancer
• Chapter 9. Daughters and the Risk of Breast Cancer
• Chapter 10. Key Phases and Broad Themes in the Experience of Breast Cancer Daughters
• Chapter 11. Conclusions
• Appendix I. Interview Guides and Other Pertinent Material
• Appendix II. Typical Interview Description
• Appendix III. Additional Case Studies
• Appendix IV. Resources
• Bibliography
• Index