Vividly showcasing diverse voices and experiences, this book illuminates an all-too-common experience by exploring how women respond to a diagnosis of breast cancer. Drawing from interviews in which women describe their journeys from diagnosis through treatment and recovery, Julia A. Ericksen explores topics ranging from women's trust in their doctors to their feelings about appearance and sexuality. She includes the experiences of women who do not put their faith in traditional medicine as well as those who do, and she takes a look at the long-term consequences of this disease. What emerges from her powerful and often moving account is a compelling picture of how cultural messages about breast cancer shape women's ideas about their illness, how breast cancer affects their relationships with friends and family, why some of them become activists, and more. Ericksen, herself a breast cancer survivor, has written an accessible book that reveals much about the ways in which we narrate our illnesses and about how these narratives shape the paths we travel once diagnosed.
|Publisher:||University of California Press|
|Edition description:||New Edition|
|Product dimensions:||6.00(w) x 9.00(h) x 0.75(d)|
About the Author
Julia A. Ericksen is Professor of Sociology at Temple University and author, with Sally Steffen, of Kiss and Tell: Surveying Sex in the Twentieth Century.
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Taking Charge of Breast Cancer
By JULIA A. ERICKSEN
UNIVERSITY OF CALIFORNIA PRESS Copyright © 2008 The Regents of the University of California
All right reserved.
Chapter One Telling Stories
Jo-Ellen's breast cancer story takes the form of a woman's worst nightmare. Her adoptive mother was a forty-year survivor, so Jo-Ellen knew the disease was something that women might get but could also recover from. Upon finding a lump at age twenty-eight, Jo-Ellen went to a gynecologist who told her that it was only a cyst, so she did not go for a mammogram and ultrasound until a year later when the lump was still there. After that, things moved pretty quickly through a double mastectomy, breast reconstruction, chemotherapy, and tamoxifen. Jo-Ellen was newly married with her life ahead of her, and, to ensure her future, she chose the most aggressive treatment, including prophylactic removal of her second breast. Tamoxifen put her into menopause by age thirty-three, a serious consequence for a woman who desperately wanted children. Even more serious was the discovery, a year after the original diagnosis, that the cancer had metastasized to her bones.
Jo-Ellen had lots of social support. Her new husband remained devoted through the loss of her breasts, her baldness, her weight gain, her loss of interest in sex, and the realization that she would never give birth. Her mother went with her for appointments, taking long lists of questions to supplement Jo-Ellen's own. Family and friends encouraged her to talk about her illness openly and to share her fears. She remained optimistic. When I interviewed her two years after the first diagnosis, she still believed she would survive in the face of several new masses, and she was hoping that her situation would not prevent her from gaining approval as an adoptive parent.
In openly facing her illness and talking about it to all who would listen, Jo-Ellen's response is a modern tale. In the second half of the twentieth century, breast cancer was transformed from an illness mentioned in hushed tones, if at all, to a huge public presence supporting a massive industry. Jo-Ellen's story is unusual because she was younger than most women at diagnosis and her disease progressed more rapidly. Breast cancer is commonly more virulent among the young. Most breast cancer does not metastasize, and, according to the American Cancer Society, 88 percent of victims live at least five years and 63 percent live at least twenty. Why then is the image of breast cancer so associated with death and so vivid in most women's minds? In her book Illness as Metaphor, Susan Sontag noted that the idea that "cancer = death" has been around for a long time and still continues to exert a strong influence.
The only other illness with an equally visible profile is HIV/AIDS. Like breast cancer, HIV/AIDS has spawned a mass of organizations devoted to its management and cure. However, the two diseases differ greatly. Most people who contract HIV feel the stigma of a disease that is associated with a "wrong" lifestyle. In contrast, few breast cancer sufferers nowadays feel ashamed of having cancer, and most talk openly or even write about their illness. In addition, AIDS severely shortens life expectancies, and, to beat the odds, patients must henceforth, and forever, organize their behavior around complex drug treatments and behavioral restrictions. With breast cancer, although medical treatment is debilitating, doctors rarely make recommendations about lifestyle changes, and most women, once treatment is finished, may return to their former lives with impunity. While cancer always brings the threat of a horrible death, the high survival rate for breast cancer means a large group of women have lived to tell their tales. Most American women know others, including family members, in this category. However, those who have survived diagnosis and treatment still live with the threat of a reoccurrence or worse, and they form a potential army of activists to keep the disease in the public eye.
Threats of reoccurrence and of metastasis to other areas of the body remain permanent possibilities for women diagnosed with breast cancer, even if these threats diminish over time. In the 1920s, physicians decided to use five-year survival rates as a benchmark for determining a cure. This benchmark has remained in place, as medical historian Barron Lerner has noted, even though there is no particular significance to the five-year time frame when it comes to breast cancer. However, both the American Cancer Society and the major cancer hospitals have long believed that emphasizing high levels of curability would promote the benefits of early detection.
Women have not always been as willing to discuss their experience with breast cancer as they are now. For many years, the stigma of breast cancer usually meant that the disease's existence was kept in the closet. Ellen Leopold examined the correspondence from 1960 to 1964 between Rachel Carson, the author of the best-selling book The Silent Spring, and her surgeon, George Crile. Even Carson, a woman who battled the scientific establishment, was private about her breast cancer. She did not see it as something to share with other women. Rather, she handled it alone with the aid of her surgeon and a close friend. She strove not to be angry but to bear up with courage. Crile, whose own wife had died of breast cancer, was ahead of his time in his willingness to reveal a cancer diagnosis to Carson, something her first surgeon would not do.
In the 1970s, several prominent women broke the silence, including Shirley Temple Black in 1972. The first woman to write about her own breast cancer experience, Rose Kushner, was diagnosed in June 1974. Kushner was a pioneer in insisting that she not be subjected to the then ubiquitous one-step operation. In this procedure, surgeons would perform a surgical biopsy, and, after examining the results, husbands and surgeons would make the final decision as to what further surgery to perform, while the patient was still under anesthesia. Women would go to sleep not knowing if they would still have a breast when they awoke. In fighting this, Kushner became one of the earliest breast cancer activists. When Betty Rollin was diagnosed in 1976, she was an NBC news correspondent. Rollin's book about her bout with breast cancer, First You Cry, became a best seller. But none of these events produced the publicity occasioned when First Lady Betty Ford announced her breast cancer in 1978 and received an outpouring of public sympathy for her plight plus admiration for her bravery. Nancy Brinker, in her account of the death of her sister, Susan Komen, in whose memory she founded the Komen Foundation, cited Betty Ford as having inspired her sister to finally speak about her own illness. And the Komen Foundation, with its annual Race for the Cure in cities across America, has continually encouraged women to publicly acknowledge their diagnoses.
Increased openness also resulted from the women's health movement. In the 1970s, feminist health activists began questioning the way American surgeons continued to perform debilitating radical mastectomies when European doctors were switching to less invasive lumpectomies. Faced with growing evidence that the more limited surgery did not lower survival rates, a few American physicians had begun to perform lumpectomies or to modify radical mastectomies. Yet most women, including those-like Betty Ford-with access to the most prominent surgeons, still had the more invasive surgery. This typically occurred because most women consented to a one-step procedure, as did Betty Ford. In their best-selling book Our Bodies, Ourselves, members of the Boston Women's Health Collective made the case that radical mastectomies were abusive, and this idea was picked up by women's magazines. In 1979, as a result of pressure from both inside and outside the medical profession, the Consensus Development Conference at the National Institutes of Health (NIH) agreed that the radical mastectomy was no longer the accepted procedure, and most surgeons switched to the newer surgery.
The National Breast Cancer Coalition (NBCC), founded in 1991, has taken a more explicitly feminist position than the Komen Foundation. It lobbies Congress to increase funding for breast cancer research and educates survivors to participate in allocating this funding. By copying the model of AIDS activism, the organization has successfully increased funding for breast cancer research and trained thousands of activists. These two strands of breast cancer activism, represented by the NBCC and the Komen Foundation, continue to exist side by side along with other more militant organizations such as Breast Cancer Action as well as numerous support and educational groups.
The attention and public discussion mobilized by these groups have led to an increase in symbolic representations of the disease, particularly in the media. These images include, among others, the danger to the sexualized breast; death and dying; sacrifice, especially to family; and the miracles of modern scientific medicine. When diagnosed, a woman has to deal with the disparate imagery of her plight as she works her way through the frightening and tedious steps of decision-making and treatment. Of all cancers, that of the breast is currently the best publicized with the greatest resource allocation. In much of the Western world, breasts are the single most important symbol of women's femininity, and, even though many women feel ambivalent about their actual breasts, surgical removal or partial removal of the breast is traumatic, an attack on womanhood itself. Not only do breasts signify women's facility for nurturing, they are prime sexual ornaments. In the current era, the ideal female body is seen as a slender figure with large breasts. Since most women cannot expect to achieve this shape without assistance, it is not surprising that liposuction and breast augmentation have become two of the three most common plastic surgeries for women.
The media, particularly women's magazines, frequently run stories about breasts. Most of these stories are about breast cancer. A search of top-selling women's magazines published during a five-year period produced an average of almost one article per issue on some aspect of the disease. In studying the representation of breast cancer in the media, Cherise Saywell and colleagues described it as having the most visible press coverage of all cancers. When Jennifer Fosket and colleagues examined breast cancer stories in popular women's magazines, they found that the overriding message was women's personal responsibility for detection, prevention, and survival. Describing the various faces of breast cancer portrayed in the media and elsewhere, and the fears created in women, helps us understand how women respond to a diagnosis and how they cope during their months of treatment.
For the media, breast cancer is a sexy subject. Although the majority of sufferers are over fifty years old, magazines frequently portray it as a young woman's illness. And even where writers note the actual age distribution, they emphasize youth indirectly. Self magazine's annual section on breast cancer for 1999 noted that this "has never been primarily a young women's disease" but undermined this point by illustrating the section with portraits of young survivors. The magazine's selection of photographs, which emphasized youth and ongoing reproductive lives, showed a woman diagnosed at age twenty-eight who gave birth four years later, a thirty-three-year-old writer who "wants young women to pay attention to their bodies because their symptoms can be easily overlooked," a "fitness enthusiast" diagnosed at thirty-one, and a woman diagnosed at twenty-nine who subsequently married and gave birth. The visual message, that breast cancer is a disease of young women, was underscored by the inclusion in the issue of an advertisement for Ford Motor Company, which showed a little girl being hugged by her mother; the caption read:
My breast cancer hero is my mommy. In April 1993, at the age of 27 and six weeks before her wedding day, she discovered a lump in her right breast. She survived lumpectomy and lymph node dissection. In June of that year, she married my daddy.... [When] I was conceived ... she decided she had to live. She would not allow me to grow up without her.... She promised me that she would make it to my fourth birthday so that I would remember her if nothing else. I turned five this year.... Through her love for me and my Daddy, she survived.
Such images have great emotional appeal and stress the idea that surviving breast cancer is a matter of courage and perseverance. By implication, therefore, women who do not survive lack these attributes.
A titillating image of breast cancer appeared in the annual fall fashion promotion, "Fashion Targets Breast Cancer." For the four days of this event, 2 percent of Saks Fifth Avenue's sales went to breast cancer charities. An eight-page spread in the New York Times told the story. On the first page, three very young fashion models wore their tresses long and full, much of their skin bare, tight jeans, and the campaign T-shirt, the logo of which is a bright blue and navy bull's eye surrounded by "Fashion Targets Breast Cancer" and "Council of Fashion Designers of America." This T-shirt was designed by Ralph Lauren, one of many prominent supporters of breast cancer research. Other similarly dressed young women adorned subsequent pages, in every case wearing full sets of perfect breasts, not breasts already altered by disease. These were threatened breasts, threatened because even beautiful, vibrant young women might succumb. The use of the bull's eye positioned on their chests and the word "Targets" underscored the danger.
These newer images of breast cancer, portrayed in the media and by cancer organizations, compete with older ones of death and disability. There remains an overwhelming fear of dying. Many women grew up in families where breast cancer was rarely mentioned. Memories of older relatives with the disease frequently involve debilitating surgery or painful death. This image of silence and death still appears in the media. Indeed, Brinker's account of Komen's death is in this tradition. Brinker described her sister as a hometown girl who trusted her family doctor and questioned neither his advice nor that of the surgeon to whom the doctor sent her. It was too late by the time Komen switched to competent treatment.
Other accounts make a different point. A number of descriptions of courageous and independent women who still died have appeared, among them Sandra Butler and Barbara Rosenblum's account of their shared experience of Rosenblum's diagnosis and eventual death from breast cancer. Sometimes stories of death in top-selling women's magazines describe courage in death's face. For example, a woman with metastatic breast cancer told how she taught her daughter important lessons about life and death. More frequently, articles with titles such as "Will I Inherit My Mother's Disease?" contain frightening implications of dying too young. In one account, a woman's mother, grandmother, and great-grandmother had all died of breast cancer; after much hesitation about undergoing genetic testing, the story's subject tested positive for one of the known breast cancer genes and chose prophylactic breast removal to increase her chances of beating the survival odds.
Another immediate concern for many women upon receiving a diagnosis of breast cancer is how family members will cope with their diagnosis. Here, too, images of death and disfigurement abound. Many women are the main caregivers in their families, the person around whom family life revolves. Family members do not always know how to respond when this caregiver becomes seriously ill, and their fears for her survival mix with concerns about their own potential loss of support. Women often anticipate such problems, both because of previous personal experiences and because of the cultural expectations about wives, mothers, and daughters. Newly diagnosed women may find themselves having to provide emotional support to family members, rather than focusing on their own treatment.
Excerpted from Taking Charge of Breast Cancer by JULIA A. ERICKSEN Copyright © 2008 by The Regents of the University of California. Excerpted by permission.
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Table of Contents
List of TablesAcknowledgments
Introduction1. Telling Stories 2. Following the Doctors’ Orders 3. Patients and Doctors as Partners 4. Faith in the Ultimate Authority 5. Opposing the Mainstream 6. The Assault on the Breast 7. Bodies after Cancer 8. Breast Cancer Activism, Education, and Support Conclusion Notes Bibliography