Read an Excerpt
Living with Breast Cancer
Susan J. Ferguson, Ph.D., and Anne S. Kasper, Ph.D.
Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Susan Sontag, Illness as Metaphor
Breast cancer has affected the lives of millions of women as well as their families, friends, and communities. More than 175,000 women were diagnosed with invasive breast cancer in 1999, and approximately 44,000 died of the disease. These numbers are, quite simply, staggering. How and why this disease has reached epidemic proportions is the subject of this book. This book is not, however, a guide to the latest treatments for the disease, nor is it a journal of personal experiences with breast cancer. Instead, this book examines the social meanings of illness and the ways that society has shaped what we know about breast cancer. The title, Breast Cancer: Society Shapes an Epidemic, reflects this emphasis on understanding how society has created and shaped our knowledge of breast cancer as an illness. To say that breast cancer is socially constructed means that cultural assumptions and biases influence our knowledge, perceptions, and experiences of breast cancer in this society. The chapters in the book explore this social construction of illness by presenting a critical assessment of scientific research, breast cancer policymaking, themedia, environmental factors, the changing health care system, and their effects on breast cancer. The book also looks at breast cancer's historical roots as well as the contemporary breast cancer advocacy movement. Furthermore, it analyzes how society's troubling views of women in American culture have deeply influenced how women experience and understand breast cancer. In sum, this is a book that paints a critical picture of the ways that society has shaped what we know about breast cancer. The authors in this volume are concerned with this social construction of breast cancer, with viewing this illness through a social lens.
UNDERSTANDING BREAST CANCER
THROUGH A SOCIAL LENS
We most often think of breast cancer, and most diseases, in medical terms. We weigh its clinical signs and symptoms, how serious it is to our health and survival, what may have caused it, subsequent medical tests and treatments we may undergo, and the kinds of research that may be underway to understand it and, perhaps, find a cure. However, we rarely think about the ways that our culture has influenced what we know and do not know about breast cancer.
Whether or not we are aware of it, society and social institutions shape the occurrence of disease, the forces called upon to respond to disease, and the experience of illness. An editorial in the American Journal of Public Health reminds us that we have known this fact since Rudolf Virchow, the renowned nineteenth-century German pathologist, and others first wrote about social medicine. Quoting more contemporary authors, the editorial's authors explain the social construction of illness: "Societies in part create the disease they experience and, further, they materially shape the ways in which diseases are to be experienced." They add that, "the varieties of human affliction owe as much to the inventiveness of culture as they do to the vagaries of nature" (Link and Phelan 1996:471).
When we begin to look at breast cancer with a social lens rather than a medical one, we note that much changes. For example, instead of wanting to know the results of the latest clinical trial, we want to know why some forms of research are being undertaken while others are not, which scientists get funded and why, who is paying for breast cancer research, and who benefits from the findings. In other words, the vast public and private research enterprise can be viewed as a social institution, a powerful part of the culture that reaches into our lives in ways that are congruent with its own particular goals. The goals of the research establishment include finding answers to perplexing and pressing questions about disease, but the goals are also economic and political; these dimensions influence research priorities, means, and outcomes.
Utilizing a social lens also means examining the patient's experience of illness. For example, many of us assume that a woman's experience of breast cancer is determined by the disease itself. A breast malignancy may mean removing a woman's breast or part of it, causing the loss of a body part that has been transformed by disease. However, when a social perspective is applied, we begin to realize that this loss involves far more than a physical part of a woman's body. From her earliest years, a girl identifies with what it means to be female, and a myriad of messages suggest how she should view herself, and, perhaps more important, how society will view her. A complex array of meanings are attached to being female, not the least of which are the expectations that a woman should be physically attractive, sexually inviting, and maternal. No body part plays a more defining role in these expectations than the female breast. Freighted with these social expectations, many women who lose a breast often feel a loss of identity and self-worth, sometimes with enduring effects that can compromise their sense of well-being, their relationships, and their futures.
Applying a social lens to breast cancer also means looking at the social context of illness. The authors of Women's Health: Complexities and Differences offer one way to think about the social context of illness when addressing women's health needs, which involves moving away from the biomedical model of disease toward a social model of illness. They argue that women's health is "embedded in communities, not just in women's individual bodies" (Ruzek, Olesen, and Clarke 1997:13). These authors offer an inclusive model for addressing women's health that demands a recognition of the conditions of women's lives and work, such as race and ethnicity, education and income resources, housing and neighborhoods, social relationships and support, and other circumstances and experiences that shape their lives and health. They boldly state that, "American society must come to terms with this prerequisite to health, or all of the breast cancers `caught early,' the chronic diseases avoided through positive health practices, and the benefits of new technologies will be undermined and overshadowed" (21).
Similarly, a social lens enables us to view changes in the social construction of breast cancer over time. For example, it was not long ago when breast cancer was treated as strictly a private matter. Breast cancer was not discussed publicly, and social norms ensured that it was generally ignored in research labs and medical conferences. Breast cancer was not a subject for policymakers and regulators, and it was confined to the occasional polite article in women's magazines. In fact, there was even a time in the early 1980s when Vincent DeVita, the director of the National Cancer Institute (NCI), in order to allocate maximum research dollars to other diseases, was willing to do away with breast cancer study sections.
However, the development of the breast cancer advocacy movement, large increases in research dollars, hearings in Congress, and vast amounts of attention in the media have changed this view of breast cancer. When we began this book in 1996, breast cancer was already sinking into the public's consciousness. The impression today is that breast cancer is a growth industry, with Race for the Cure runs and walks in most major U.S. cities, the constant entry of new drugs and clinical trials to combat the disease, whole bookshelves devoted to the topic at local bookstores, and a cornucopia of tee-shirts, hats, pins, and pink ribbons. One cannot turn on the television or open a magazine without seeing advertisements promoting breast cancer awareness or certain types of breast cancer treatments. Moreover, many corporations are donating funds to breast cancer research, including American Express, Avon, Ford Motor Company, Gap, Hallmark Cards, Lee (jeans), and Yoplait (yogurt). It is important to realize that these corporations are directly benefiting from breast cancer awareness campaigns via their public relations, increased visibility, and profits. Even the U.S. Postal Service has jumped on the breast cancer bandwagon by issuing the first stamp ever to be used as a fund-raising vehicle for a social cause. The first breast cancer awareness stamp was issued in June 1996, and a second stamp, issued in July 1998, costs seven cents more than first class postage, with the extra funds donated to breast cancer research. The breast cancer stamps have been a public relations boon for the U.S. Postal Service, but it is not yet clear how much money has gone to breast cancer research. Much of the public discourse on breast cancer focuses on Breast Cancer Awareness Month every year, which not only benefits many corporations and organizations but now extends beyond the month of October to 12 months of publicity and self-promotions. In brief, this public discourse makes breast cancer one of the most definitive social issues today.
Thus, using a social lens to view breast cancer also enables us to examine the social forces, including corporate public relations, pharmaceutical companies, and nonprofit organizations, that have shaped the public discourse surrounding breast cancer. One of the most powerful forces in shaping the growing public awareness of breast cancer is the media. Increasingly, women's breast cancer narratives and art work appear in the mainstream press and are often treated as media events in and of themselves. One of the most famous incidents occurred in August 1993, when the New York Times Magazine ran a cover photo of a mastectomy self-portrait by photographer Matuschka. The cover photo showed Matuschka's mastectomy-scarred chest with the headline "You Can't Look Away Anymore." The public outcry concerning this cover initiated discussions about the lack of visibility of women's breast cancer experiences and treatments.
Since that 1993 cover photo, breast cancer is no longer an invisible or silent illness. The stories of women with breast cancer appear frequently in the press, especially those of well known women. For example, the New York Times Magazine ran excerpts from Peggy Orenstein's cancer diary in June 1997. Orenstein, a respected author and researcher, was 35 years old when her breast cancer was diagnosed. When Linda McCartney died from breast cancer in April 1998, newspapers around the world reported the story. In June 1998, the media followed a team of women living with breast cancer who climbed Mt. McKinley, the highest peak in North America. The film Climb Every Step was made of their journey. The group was primarily sponsored by the Breast Cancer Fund, and while no woman in the team made the summit, the climb and surrounding media blitz raised awareness and funds for breast cancer research (MacPherson 1999). In late 1999, the media focused on the attempts to rescue Dr. Jerri Nielson, a physician for a crew of researchers at the inaccessible Amundsen-Scott South Pole Station. Nielson diagnosed her own breast cancer in mid-July 1999 and proceeded to treat herself with chemotherapy because she could not be evacuated during several months of severe weather. Nielson was finally evacuated for emergency treatment of her breast cancer in October 1999.
The reality of breast cancer lies behind all these media reports and public relations campaigns. It lies with the many not-so-famous women who represent the 1.5 million American women who will be diagnosed with breast cancer in the next decade and the half-million women whose lives will be lost. The reality also lies with the millions of women currently living with breast cancer. There is no question that these epidemic numbers warrant enormous concern for and attention to breast cancer.
How did this social change in the awareness and activism around breast cancer take place? Why is breast cancer the "popular" health issue, replacing HIV/AIDS as the number one health concern? How has breast cancer come to be constructed as a major social problem in our society? Moreover, how has breast cancer had an impact on social institutions, including the family, politics, law, medicine, and the arts?
WHY WE WROTE THIS BOOK
This book explores many of these social issues surrounding breast cancer. While breast cancer is no longer simply an individual woman's worst fear, it is unclear how and why breast cancer has become a social problem, one that captures the attention of the public on television, in movies, magazines, and even the Wall Street Journal. A review of the breast cancer literature reveals that no one has yet, comprehensively, addressed the powerful and controversial social forces that construct our individual and collective responses to this illness. We believe that this book is the next logical step in our understanding of how and why breast cancer has a profound effect on the lives of all American women.
We have written this book in the spirit of the contemporary feminist Women's Health Movement and with the belief that the more we understand about women's health and the contested ground and inequalities of women's lives, the better for us all. We owe deep appreciation to the many women who have written books about their experiences with breast cancer, such as Rose Kushner's Breast Cancer: A Personal History and Investigative Report (1975) and Audre Lorde's Cancer Journals (1980). Many brave and insightful books have been written since the 1980s. The daring with which these writers, past and present, have challenged society's refusal to pay attention to breast cancer and the enormous suffering that results has given us much inspiration.
Our goals in writing the book are several. First, we hope to better understand breast cancer as a social phenomenon, even as a social problem. We have asked the question, How do social forces, such as gender and political power, shape how we understand and experience breast cancer? Second, we hope to bring attention and clarity to the social concepts and structures that frame breast cancer. If we are fortunate, this book will prompt more research into the social causes of breast cancer and provide added strength and arguments for the breast cancer advocacy movement. Finally, we also hope that the critical analysis found in all of the chapters will prompt readers to think in new ways about social institutions and social forces that many of us take for granted. Whether we think of the economy, the health care system, or poverty, for example, these entities are not immutable. Rather, like all social phenomena, they are in constant flux and open to question and change. Questioning the status quo of breast cancer will help all of us better understand this social problem.
WHAT IS KNOWN ABOUT BREAST CANCER
One way of understanding breast cancer as a social problem is to examine the current data. When we look at breast cancer data, we find that breast cancer incidence and mortality vary greatly around the world. Western industrialized countries tend to have higher rates of breast cancer than Asian countries and many countries in the developing world. In 1995, the United States had the fifteenth highest rate of breast cancer mortality among 46 countries. Ireland, Denmark, and the Netherlands had the three highest rates, while China and Albania had the lowest rates of breast cancer deaths (American Cancer Society [ACS] 1998). Why countries have varying rates of breast cancer remains unclear, although some evidence points to differences in diet, industrial processes, and longevity as contributing factors.
In the United States, breast cancer is the most common type of cancer found among women, and it is the second leading cause of cancer deaths among American women. For many years, breast cancer was the primary cause of cancer deaths among women in the United States; now lung cancer is the primary cause. Still, the U.S. Department of Health and Human Services estimated that, in 1999, there were approximately 175,000 new cases of breast cancer, and about 43,300 women were expected to die from breast cancer (HHS 1999). These high rates of breast cancer occurrence and mortality vary across states and geographical regions. For example, between 1990 and 1994, the eastern states of Massachusetts, New Jersey, and Connecticut had higher incidence rates of breast cancer than other states. Moreover, Washington, D.C., New Hampshire, and New Jersey had some of the highest mortality rates from breast cancer (ACS 1999). However, these incidence and mortality rates also vary by age, race-ethnicity, socioeconomic status, and sexual orientation.
The incidence of and mortality from breast cancer increase with age, with the odds of a woman developing breast cancer significantly increasing as she ages. For example, up to age 39, a woman has a 1 in 227 chance of developing breast cancer. From age 40 to 59, a woman's chance of developing the disease is 1 in 25, and from age 60 to 79, a woman's chance is 1 in 15. From age 80 on, a woman's chance of developing breast cancer is 1 in 8 (ACS 1998). This last statistic, without the age criterion mentioned, is the one most often heard in media reports about breast cancer, and it has frightened many women. The accurate reading of this statistic means that the 1 in 8 chance of developing breast cancer applies to women over a lifetime of 80 years. These age-associated risks of breast cancer are important, and we know that cancer, in general, is a disease of aging. Yet, research shows that the use of breast cancer screening tests, specifically periodic mammography and physical breast examination by a physician, decline with age, especially for women over the age of 65 (Burg, Lane, and Polednak 1990). The reasons for this decline are not entirely clear, although it may be due in part to the inability of older women to pay out-of-pocket for health care. Moreover, until recently, Medicare paid for mammograms every other year only, rather than annually.
The incidence and mortality from breast cancer also differ among racial-ethnic groups of women. For example, breast cancer rates for African American women are lower than for white women but higher than for Latinas. However, five-year survival rates are lower and death rates are higher for African American women than for either white women or Latinas with breast cancer. Some of the reasons for these statistics are that African American women have higher rates of poverty, are more likely to be diagnosed later, and are often undertreated when compared to their white and Latina counterparts (National Women's Health Network 1996).
Breast cancer incidence and mortality for Latinas is lower than that for either white or African American women. However, the incidence of breast cancer among Latinas is increasing faster than among other groups of women. Moreover, Latinas who are diagnosed with breast cancer are less likely to reach the five-year survival marker than white women. Latinas represent a diverse population, including women who are from Cuba, Puerto Rico, Mexico, and other Central and South American countries. These different subpopulations have different incidence and mortality rates, and more research is warranted on these understudied populations. A few of the reasons for their poorer statistics is that Latinas are the least likely group to be insured of all major racial-ethnic groups, they often face language barriers in getting health care, and they report not being encouraged by health care providers to seek regular breast cancer screening (National Women's Health Network 1996a).
Incidence rates also vary widely for Asian American women with breast cancer, from low rates for both Korean and Vietnamese women to the highest rates among Native Hawaiian women. Moreover, mortality rates for Asian American women are the lowest among racial-ethnic groups in the United States. However, it is important to note that when Asian women migrate to the United States, their risk of breast cancer increases sixfold as compared to women in their native countries. This increase has been at least partially explained by the women's exposure to Western lifestyles, particularly diet and nutritional factors. Asian women also are the least likely of any racial-ethnic group to have an annual gynecological exam or to ever have had a mammogram. Mistrust of Western medicine, cultural beliefs and practices, and certain socioeconomic factors may explain these low rates of health care services among Asian American women (National Women's Health Network 1996b).
In general, Native American women also have lower breast cancer incidence rates than most other groups of women, including white and African American women. However, incidence rates for Native American women vary by region, with the lowest rates in states such as Arizona and New Mexico, and higher in Alaska. Breast cancer mortality rates for most Native American women are lower than for white, African American, and Latina women, reflecting the lower incidence rates among Native American women. However, the five-year breast cancer survival rate for American Indian women is lower than that of all other ethnic and racial groups in the United States. This lower survival rate may be due to lack of access to health care services. Although the Indian Health Service provides free health care to Native Americans, many are unable to use it. For example, the National Women's Health Network reported in 1996 that no Indian Health Service facilities exist in California, which has the second largest population of Native Americans in the United States.
These differences in the incidence, survival, and mortality rates from breast cancer among racial-ethnic groups of women raise numerous questions about the causation, diagnosis, and treatment of breast cancer in diverse communities. Some of these differences have been attributed to differences in access to medical care and diagnosis at a later stage of disease. Racial differences in breast cancer also are attributed to socioeconomic and cultural factors, such as poverty, inadequate housing, discrimination, language barriers, and nutritional and exercise patterns. Other economic factors, such as having health insurance or the ability to pay for health care, also affect breast cancer diagnosis and treatment outcomes.
To date, there have been few studies that have investigated breast cancer incidence and mortality rate differences between heterosexual women and lesbians. In 1993, a study by Suzanne Haynes found that lesbians had a two to three times greater risk of developing breast cancer than heterosexual women. Haynes theorized this result based on data from the National Lesbian Health Care Survey, where she found that lesbians tended to have higher body-mass indexes (ratio of weight to height), higher alcohol consumption, and higher rates of late childbearing or no childbearing (Galst 1999). This early study has been challenged on a number of levels, including the limitations of having a sample that was not randomly drawn from the lesbian population and questions concerning how the calculations were done to estimate risk. However, Stephanie Roberts and a team of researchers (1998) studied breast cancer risk factors among lesbians and heterosexual women who received care at Lyon-Martin Women's Health Services in San Francisco between 1995 and 1997. They found that among their sample of 1,019 low-income lesbians and heterosexual women, lesbians do tend to have higher body-mass indexes and fewer pregnancies than heterosexual women, but they do not consume more alcohol. Based on the former two variables, Roberts et al. conclude that lesbians may have a greater risk of developing breast cancer than do heterosexual women. Other researchers argue that lesbians are at greater risk because they see doctors less frequently for routine gynecological exams, whereas heterosexual women see doctors more often for birth control and prenatal care, and therefore, have their breasts checked more frequently. Researchers also have found that lesbians report facing discrimination when they seek medical care, leading many lesbians to delay or refuse regular health care services. The less frequent contact lesbians have with health care providers, the less likely they are to have breast cancer detected at earlier stages. Overall, more research is needed to thoroughly examine this relationship between sexual orientation and breast cancer.
OVERVIEW OF THE BOOK
The book addresses a number of powerful and controversial social issues surrounding breast cancer. It does so in order to provide the reader with an understanding of the complex forces that combine to construct our individual and collective responses to this illness, and why breast cancer has a profound effect on the lives of all American women.
Part One begins by setting the historical context of breast cancer diagnoses and treatment. Chapter One, "Inventing a Curable Disease: Historical Perspectives on Breast Cancer," by Barron H. Lerner, M.D., Ph.D., provides a history of breast cancer, including when breast cancer was first discovered and diagnosed by physicians. This chapter looks at the medical construction of breast cancer, including how breast cancer has been defined differently over time. Particularly interesting is how breast cancer, which initially was defined as an "incurable disease" until the end of the nineteenth century, became constructed as a "curable" disease. Lerner argues that historical analysis is a particularly effective approach for demonstrating how medicine is a social process. For example, late nineteenth-century Johns Hopkins University surgeon William Halsted advanced a new model of breast cancer as a slow growing disease that long remained localized to the breast and nearby tissues. Halsted and his followers argued that an extremely extensive operation, radical mastectomy, could cure breast cancers that were discovered early enough. Yet, this attempt to transform breast cancer into a curable disease reflected such social factors as the growing authority and professionalization of surgery and the rise of the modern hospital where surgeons could perform operations that were both technologically sophisticated and potentially lucrative. Ultimately, the disappearance of the radical mastectomy after 1985 had as much to do with the rise of feminism and patients' rights as with scientific evidence that the operation was unnecessary. As with radical mastectomy, Lerner argues that current debates over breast cancer diagnosis and treatment are socially constructed and unlikely to be resolved by clinical research alone.
In Chapter Two, entitled "Deformities and Diseased: The Medicalization of Women's Breasts," Susan J. Ferguson, Ph.D., discusses medicalization, a process through which natural human experiences come to be seen as conditions requiring treatment. In this chapter, Ferguson argues that women's breasts have been medicalized by members of the medical establishment, including plastic and reconstructive surgeons, the American Medical Association (AMA), the manufacturers of breast implants, and the U.S. Food and Drug Administration (FDA). Specifically, these groups promote the medicalization of women's breasts by defining women with small breasts as "deformed" or "diseased." Moreover, the medical establishment promotes breast reconstruction after mastectomy as an integral part of breast cancer treatment, medicalizing what is otherwise an elective and cosmetic procedure. In a fascinating historical account of the often bizarre and dangerous materials used as breast implants over time, Ferguson reveals the sometimes life-threatening physical, emotional, and financial costs women pay for these procedures. She also details the failure of the medical establishment to investigate the safety of these devices and their implantation in women's bodies, as well as its failure to inform women of the potential risks of these surgeries. The chapter concludes with several suggestions to redress the medicalization of women's breasts and the social control that is its result.
Divided into three sections, Part Two of this book focuses on breast cancer as a social problem. The first section emphasizes the economics of breast cancer, the second looks at women's experiences of breast cancer, and the third section addresses the politics of breast cancer.
The first chapter in the section on the economics of breast cancer is "Breast Cancer and the Evolving Health Care System," by Ellen R. Shaffer, M.P.H. Shaffer addresses whether the current health care system is meeting, and if it can meet, the health care needs of women with breast cancer. She argues that reform of the U.S. health care system is a breast cancer issue because the fragmented organization and profit-driven financing of the current system obstruct access to high quality care for women with breast cancer. Too often, Shaffer demonstrates, diagnosis is delayed or inaccurate, treatment does not conform to recommendations based on the latest medical evidence, and women are unable to participate in making medical decisions about their own health care. Moreover, the rise of corporate medicine has compounded existing inequalities based on gender, social class, race, and insurance status. While many early detection programs have proliferated, breast cancer policy and advocacy have yet to focus on and overcome system-based barriers to quality and access to the full range of care, not just detection. Shaffer concludes the chapter by showing how active patients and model health care providers can point the way to patient-responsive, coordinated, evidence-based, and equitable care for breast cancer patients.
The second chapter in this section is "Profits from Pain: The Political Economy of Breast Cancer," by Jane S. Zones, Ph.D. Zones argues that one of the reasons so many resources are invested in detection, diagnosis, and treatment of breast cancer is because they are profitable, whereas investments in prevention will not bring large financial returns. Zones argues that increasing resources directed at detecting and treating breast cancer have encouraged the development of innovative products and procedures and that the prominence of breast cancer has become a means of creating wealth. Commercial enterprises have sought to increase their market share by producing new commodities and services, making exaggerated claims of benefit or minimizing risk, creating demand, and limiting competition. New breast cancer drugs, high-dose chemotherapy, genetic testing, and screening mammography illustrate these economic strategies. Moreover, Zones argues, interlacing corporate interests and public relations present a formidable challenge to women's best interests regarding breast cancer. Zones concludes that the financial interests in breast cancer have limited and distorted the information that is available to affected women and their advocates.
The second section of Part Two focuses on women, their bodies, and the illness experience, Chapter Five, "Women's Experiences of Breast Cancer," by Marcy E. Rosenbaum, Ph.D., and Gun M. Roos, Ph.D., explores how women perceive and experience breast cancer. The authors argue that women's experiences of breast cancer are inextricably woven with their social worlds. That is, the women struggle with the incongruence between societal expectations for women with breast cancer and their personal experiences of the illness. The chapter includes the voices of women with breast cancer and how they grapple with pervasive and constraining social meanings about breasts and breast cancer that surround this illness. The authors demonstrate that breast cancer is not just a personal process but, rather, an experience filtered through the meanings constructed by the social contexts in which women live. Women respond to these meanings in a variety of ways that include acceptance, rejection, and the struggle to balance between competing meanings. The persistent and often onerous social meanings available to women serve to mute expression of the myriad ways women can and do respond to breast cancer. The authors conclude by describing an expansion of social models that are needed to enable women to make more meaningful sense of their breast cancer experiences.
In Chapter Six, "Barriers and Burdens: Poor Women Face Breast Cancer," Anne S. Kasper, Ph.D., explores what it means to be poor and have breast cancer and why the experience of breast cancer is different for poor women. She reports on a study she conducted with 24 poor, urban women with breast cancer in order to understand why economically disadvantaged women are diagnosed with later stage breast cancer and are less likely to survive the disease than other women. Kasper argues that the barriers and burdens of poverty set the stage for the inappropriate and inferior cancer treatment received by the majority of the 24 women. Using descriptions of the women's life circumstances and breast cancer experiences, the chapter illustrates how difficult it was for the women to find appropriate and timely treatment for their illness. The women encountered a range of obstacles to medical services, faced significant treatment delays, and received substandard quality of care. Some of the women were unable to get a mammogram or see a doctor when they knew it was necessary, others were denied treatment for lack of funds, and one woman was left untreated a year after being diagnosed. Several women were forced to pay out of their own pockets, some went into debt either to pay for care or simply to survive while they were sick, and others were harassed by collection agencies for payments they could not meet. This chapter demonstrates how social inequality shapes women's access to care and the consequences for their health and survival.
The third section of Part Two focuses on the politics of breast cancer. In "Breast Cancer Policymaking," Carol S. Weisman, Ph.D., discusses the intersecting roles played by federal agencies (the National Cancer Institute, the U.S. Food and Drug Administration, and the National Institutes of Health), the American Cancer Society, Congress, industry, and women's health advocates in influencing the policies, funding, and health services to address breast cancer. Weisman describes breast cancer policymaking as the decisions made by society to allocate resources to research, programs, and services to prevent and treat breast cancer. Although the definition of breast cancer as a social problem that requires public policy responses can be dated to the 1970s, the 1990s witnessed an unprecedented surge of breast cancer policymaking. This chapter considers the political opportunities that made this policy surge possible, the dynamics, the multiple stakeholders who participate in breast cancer policymaking, and some implications and unintended consequences of single-issue or disease-specific policymaking for women's health. Weisman illustrates her arguments with a case study of the controversial issue concerning the effectiveness of screening mammography for women in their forties.
Chapter Eight, "Controversies in Breast Cancer Research," by Sue V. Rosser, Ph.D., provides a feminist critique of breast cancer research and science. Rosser argues that the ways scientific work is structured influences our knowledge about the biology and the causes of the disease. Rosser argues that a male-dominated, hierarchical model has created blinders and biases in the biomedical model of scientific research. Rosser further argues that the current trends and controversies in breast cancer research serve as examples of the many problems that women's health in general and breast cancer specifically have suffered. As the incidence of breast cancer has increased during the last 30 years, biases in research have translated into problems with prevention, screening, determining risk, detection, and treatment of the disease. The chapter examines how conflicting policies and messages surrounding mammography screening, bone marrow transplant procedures for advanced breast cancer, the anticancer drug tamoxifen, and breast implants result from biases in scientific research and policy.
In the last chapter in this section on the politics of breast cancer, "The Environmental Link to Breast Cancer," Sandra Steingraber, Ph.D., analyzes why there is no comprehensive and coordinated investigation into how environmental factors may be a cause of breast cancer. She argues that early detection cannot account for all the increase in the incidence of breast cancer. Rather, Steingraber points to the exponential rise in the production and use of toxic chemicals that occurred at the end of World War II. The chapter includes a review of much of the evidence that implicates a myriad of agents, such as pesticides, herbicides, hormone-disrupting chemicals, hazardous wastes, polluted water sources, workplace carcinogens, and radiation, as possible causes of breast cancer. The author also critically reviews the current argument that the science does not support in-depth research into these environmental factors. Steingraber concludes that a primary obstacle to an environmental investigation into breast cancer is that it would place in question the foundations of an industrial, capitalist, and growth-based global economy.
Part Three of this volume focuses on breast cancer and social change. In Chapter Ten, "Breast Cancer in Popular Women's Magazines from 1913 to 1996," Jennifer R. Fosket, Angela Karran, and Christine LaFia, Ph.D., analyze stories about breast cancer in women's magazines from 1913, when the first article appeared in the Ladies' Home Journal, to 1996. Their research reveals how women's knowledge of breast cancer is created, reproduced, and sustained over time by the media. The chapter demonstrates that the media and popular culture serve to transmit and shape notions of women's identity, sexuality, femininity, motherhood, and responses to breast cancer. The authors argue that representations of breast cancer in popular culture convey profound social and ideological messages and expectations to women with breast cancer. For example, women are depicted in magazine articles as being personally responsible for preventing, detecting, and surviving their breast cancer. By focusing on the behaviors of individual women, media messages succeed in propagating a blame-the-victim ideology. Furthermore, these media messages shift the focus away from the important social, economic, and political causes and consequences of breast cancer.
"Sister Support: Women Create a Breast Cancer Movement," by Barbara A. Brenner, J.D., describes how thousands of informal, community-based breast cancer support groups arose to address women's unmet needs for social support and then coalesced into an organized political movement for breast cancer advocacy. Brenner recounts how this process began in the mid-1970s, during the early years of the contemporary Women's Health Movement, when women came together for support following a breast cancer diagnosis. By the early 1990s, there was more than one national breast cancer organization, and efforts to increase research funding had met with considerable success. Today, women with breast cancer participate in some of the decision-making processes for research funding. However, at the same time, grass-roots activists have raised questions about the nature and direction of breast cancer research. In addition, they have pointed to the failure of the breast cancer movement to reflect the experiences of the full diversity of women at risk and diagnosed with breast cancer. Brenner demonstrates that these and other controversial issues, such as funding sources, alliances with industry and medicine, the growth of grass-roots feminist activism, and environmental causes of breast cancer, are bringing into focus differences among breast cancer organizations that will determine the future direction and impact of the breast cancer movement.
The concluding chapter, "Eliminating Breast Cancer from Our Future," written by the editors, looks toward the issues that are ahead for breast cancer as an illness and as a social problem. The editors map a future for breast cancer that is based on the chapter analyses of the social forces currently influencing breast cancer, and