My maternal grandmother, as the formal family story relates, died of liver cirrhosis. She was hospitalized in a private clinic in the city of Thessaloniki, went into a coma and died in 1959. What this version does not include, however, is that my grandmother kept a breast lump a secret for many years. When she eventually visited a doctor, he performed such a radical surgery that she did not survive it, and she died from liver complications. In the familiar vein of the conspiracy of silence surrounding cancer, the family kept her breast cancer a secret from friends, affines, and strangers. I have no memory of my grandmother, but one of her cousins described the mastectomy that was performed on her by the city’s best surgeon, trained in Germany: “It reached all the way to her back, her neck, under her armpit. It was awful. She suffered so much.” One never knows what my grandmother would have done with her scar and her ‘missing breast’ had she survived the surgery, but most likely she would have shoved a sock, or a piece of cloth in the empty spot in her bra. At the same time, one never knows how the surgery influenced her sexuality, her sense of female attractiveness and her body image, as a woman of her era. She gave birth to five children and suffered at the hands of an abusive husband, her main concern being to have enough food on the table to feed her family, and not her body and sexuality.
Fotoula was one of the few women I knew when I was growing up in Greece in the 1970’s, who had a mastectomy and survived breast cancer. She was also quite unique in overcoming the conspiracy of silence that mantled the dread disease. An educated woman with an independent career, she spoke openly about her ‘missing breast.’ “What do I do to forget it is missing? I sing in the shower,” she used to say laughingly. Her audience did not share the humor and most women present grew melancholic thinking of the possibility of getting the disease themselves, dreading loosing the cherished body part.
Breast cancer has been for centuries a dread disease for women across the globe (Lerner 2001, Love 1991). The first written mention of the disease comes from Hippocrates describing a woman from Avdira (Halkidiki) who bled to death from her breast. He, like other physicians of antiquity, did not have any remedies for breast cancer and his patients usually died from it. Non-professionals had begun performing mastectomies and other excisions during the historical period. For example, the ex voto painting from the 1770’s colonial Mexico, housed at the Wellesley College Museum, depicts such a surgery performed on a pale woman who survived the surgery long enough to commission the painting, but she did not survive the disease. For those women with no access to anybody who could perform the excision, burning the breast with hot irons, as did a woman in Crete, was one of the most widely used procedures (Karakasidou 2008).
It was not until the last quarter of the 19th century, when Dr. Halstead of Johns Hopkins perfected his radical mastectomy method (Lerner 2001). For over a century, women fell victims to male surgical knives that tried to extract as much of the cancer as possible, within a social milieu that encouraged a silence about the disease. Deformed and muted, most women with breast cancer lived lonely lives. By the last quarter of the 20th century and the beginning of the new millennium, the period of radical mastectomies was brought to an end by breast cancer activism, improved techniques of lumpectomies and advances in molecular knowledge abut the systemic character of breast cancer. It is still scientifically questionable whether those radical surgeries had, in fact, saved lives; nevertheless, an additional problem for women patients in the age of modern: what to do about a missing part of the body that society cherishes, adores, and venerates as highly important in the construction and performance of gender and sexuality?
When the American lesbian feminist activist Audrey Lorde (1992) underwent a mastectomy in the 1970’s, a woman from the American Cancer Society visited her hospital room right after her surgery, offering her a nice pad to conceal her missing breast. The pad was a more specific aid to replace the sock or the piece of cloth that was often used to conceal a surgically removed breast in the past. I will devote this paper to critically evaluate the efforts on the part of patients, clinicians, the cosmetic industry and society at-large to deal with the ‘missing breast.’ My analysis will hopefully unravel the masterful ways through which a new ‘conspiracy of silence’ is constructed to hide the ‘face of cancer’ by refashioning scars and missing body parts. Drawing on ethnographic data from Greece and the US, this paper offers a brief reflection on the biopolitics of cancer and embodiment in late modernity.
According to the American Cancer Society (2008), almost two hundred thousand American women will get breast cancer this year, and approximately 25% of them will need a mastectomy (National Research Center for Women & Families 2008). After losing her breast to cancer, a woman in countries like Greece and the US, now has three options: she can leave the scar as is, or use an external prosthesis, or undergo breast reconstructive surgery. In the world of modern individualism, it is the female patient who is expected to decide what is good for her. Physical, emotional, and social reasons may influence her decision whether to cover up the scar or not. Some women wait to adjust and later make an ‘educated’ decision; others take the prosthesis or reconstruction as a ‘package’ right after the mastectomy.
Covering up the loss
Even in the past world of Halstead’s radical mastectomies, when women had no power in decision making and no sophisticated reconstruction was available, the first thing a woman felt after a mastectomy was a sense of loss. “I woke up from anesthesia,” another female relative in Greece told me, “and I immediately reached with my hand for the cancerous breast. It was still there, thank God. The doctors told me before the surgery that anything could happen.” This schoolteacher was in her late fifties when she was diagnosed with breast cancer, but had a lumpectomy, chemotherapy and radiation treatment. She survived the cancer, but she still enjoys telling the story of how she did not loose her breast. But not all women are that lucky. In her book The Cancer Journals, Audre Lorde wakes up after the surgery and feels “an immediate sense of loss” (Lorde 1992: 23). She does not describe it as a physical pain, but rather as a sharp emotional pain of separation that cuts through her core. Loss and separation emotions are understandable, given the social importance of the breast as it pertains to beauty and sexuality, and not to biological functions (breast feeding infants, for example). Lorde echoes many others when she describes the breast as “such a cherished part” of a woman, whether she is straight, queer, old, or young (Lorde 1992: 31). In a culture where a woman’s breasts are fetishized, scrutinized, and compared, it makes perfect sense that a woman would feel like a part of her identity and womanhood is missing when a mastectomy is performed on her.
Covering up pity and rejection
At the same time, the loss of a breast can create pity and rejection from others. The film, The Body Beautiful (1991) is the story of a British woman who has two children with an African husband, from whom she has separated. Diagnosed with breast cancer right after giving birth to her second child, Madge Onwurah tells the audience how after her mastectomy, she used her children as her shield to protect her from rejection and pity from men. Madge makes a powerful and bold statement that illustrates how muted and ugly she feels: “There is a sliding scale of beauty that stops at women like me.” This quote indicates the degree of her alienation from the accepted female sense of physical beauty: two symmetrical breasts are definitely part of the requirement. Madge belongs to the world of the sick and the ugly. Susan Sontag (1990) insightfully wrote about the two worlds of the ill and the healthy and how they can be metaphorically described as living in two different countries/cultures. We should emphasize here that aesthetic beauty in Sontag’s structural opposition, and in our cultural norms, is reserved for the world of the healthy. Madge has lost all sense of beauty and feels that she is in another world: she does not even meet the minimum requirements of citizenship in the world of the healthy and the beautiful. She is beyond the acceptable minimal level of beauty. She feels ‘muted’ and only in the world of her fantasy she is noticed by men. Lorde herself experiences rejection as well: she feels ‘untouchable’ and ignored by a woman who flirted with her until she learned why she was at the hospital (Lorde 1992: 44).
Covering up damaged sexuality
In addition to experiencing rejection from others, a loss of sexuality is expressed by women who undergo the surgery. They felt less desired by their partners, as well. Here the case of Anna illustrates the damage that a mastectomy can cause to a woman’s sexuality. Anna is a Greek woman who was in her early fifties when she visited a breast specialist to check a lump she had been feeling in her left breast. When she came out of the doctor’s office she boldly told her friend: “He said it can be cancer and I might have to have a mastectomy.” She did have her breast removed a few weeks later, while chemotherapy and radiation treatments followed. To the amazement of some friends who did not know about her cancer, she masterfully concealed all visible evidence of the disease and the side effects of chemotherapy. She did not opt for breast reconstruction, however: ‘I was never proud of my breasts anyway, they were always too small. But, my husband and I hardly ever have sex anymore.” While the female body is expected to represent a desirable object, the body of a woman missing a breast deviates from the cultural norm. This by itself may even become a barrier of sexual desire in main stream society: “Give me back the right to be desired for my body and not in spite of it,” Madge pleads in The Body Beautiful.
Lorde tells us in her journals frankly that she could not touch herself and masturbate for a long time after her mastectomy (Lorde 1992: 24). She worries about never feeling the sensation of her breast again. However, Lorde’s experience also shows how it is possible for mutilated women to regain their loss of sexuality. She experiences a new profound sense of being, unlike other women: her sexuality is innate, and her new one-breasted body does not necessarily change that (Lorde 1992: 79).
Covering up difference
Another important reason for covering up a scar is that women themselves feel uncomfortable with their scars: they are a constant reminder of their difference: “She must protect others from viewing her deformity,” explains Young, “and herself from the gaze of repulsion” (Young 1990: 204). Cleo is an American woman who was in her late fifties when she underwent a mastectomy in order to get rid of cancer in her left breast. “I opted for reconstruction,” she told me. “Here it is, a perfect breast, although I don’t feel it, I don’t feel anything. It is there and it makes me feel better.” Cleo wiggled her artificial breast for me, a perfect replica of her no cancerous other breast. We both laughed heartily. We both knew that the purpose of the artificial breast was both for her morale, but also for the viewing pleasure of others (Young 1990:201). Her partner now has a breast to feel and enjoy while the woman feels nothing.
By covering up the missing breast, a woman avoids the situation of others witnessing, pitying, or being offended by her condition. This idea of protecting others from seeing the scar is exemplified in the magnetic sauna scene in The Body Beautiful. Madge goes to the sauna with her daughter, who has a career as a fashion model and has, what can be termed as, a ‘perfect body.” Mother and daughter have a nice bond and they go to the sauna together. While the women in the warm room, both young and old, have their breasts naked, Madge keeps a towel on, protecting her scar, making sure at all moments that her stigma will not be uncovered. Her feeling of discomfort is partly rooted in her fear that others will be uncomfortable if they see her scar. By covering up, she protects others from the reality of her cancer while also avoiding their gaze. At some point, however, maybe because she feels relaxed and happy, Madge falls asleep and the towel slips off, her scar and her missing breast coming into full vision. Shortly after this exposure, the women leave the room.
Covering up the possibility of death
The mastectomy scar is also a reminder of how the woman once had and may still have a life-threatening condition. This may distract the mood and sexual pleasure but it also reminds the patient that the disease has been there, that death is a possibility, that cancer after all is a dread disease.
In August of 1993, the cover of the New York Times Magazine displayed a photograph of a beautiful young woman with a mastectomy scar uncovered by a white dress. This was the self-portrait of Matuschka, an artist and activist who underwent surgery for breast cancer in 1991. The cover image was accompanied by an article entitled “The Anguished Politics of Breast Cancer” by Susan Ferraro. Needless to say, the photo provoked powerful reactions from readers. “I do not think women have to have an obnoxious voice… to push for a cure for breast cancer. Nor do I think that it is necessary to use ‘shock therapy’ on the cover,” a reader stated. Another woman agreed, describing it as “exploitation,” insisting that breast cancer receives “enough attention”. A third reader said it was unnecessary to “paint such a negative picture” of breast cancer (The New York Times. 5 Sept. 1993). All these disparate reactions have one element in common: fear for the disease that disfigures them, that hits them right at the heart of their femaleness. “Did Eva have a mastectomy?” a friend whispered in my ear one day, while we were having dinner with a group of female friends. She has been staring at Eva’s bust and wondering whether there is a breast missing or not. Eva was in her early thirties and pregnant when a lump on her left breast proved to be cancerous. She invited me into her bathroom one day when I arrived to her apartment, she was taking a bath. “Come on in,” she said, “and look at the great job the surgeon has done.” She had a perfect little scar at the side of her breast, hardly visible, hardly interfering with her sense of femaleness and sexuality. “No,” I told the nosy friend, “Eva did not have a mastectomy.”
Why is then the ‘other,’ i.e. the woman that did not have a mastectomy, uncomfortable with something that happens to over ten percent of the female population? Lorde suggests one reason stems from fear: women are afraid of facing both mortality and mutilation, which are two things that a mastectomy scar embodies (Lorde 1992: 65). Another reason why people feel uncomfortable around a mastectomy scar or cancer is because of the stigma cancer carries. Many readers were shocked and disgusted by the cover, describing it as a “vulgar photo” and suggesting, “Let’s not lose our dignity.” The reality of mastectomy and breast cancer in everyday life should simply not be displayed in public: as a stigma, it should be covered up.
Patterson (1987) has masterfully written about the stigma that cancer brought to people in past American culture. Unfortunately, the disease’s stigma has not vanished and a woman with breast cancer uses all that science and industry can offer her to conceal the stigma attached to her disease. In this way, the reality of the woman’s health condition is ignored: she has had cancer and may get it again. This was one of the reasons Matuschka did not opt for prosthesis and reconstructive surgery. She preferred the difficult truth and refused to repeat the social lie that prosthesis and reconstruction create. Her stance highlights how prosthesis can turn cancer into a cosmetic issue and thus silences the debates about causality of the scar and the cancer.
Covering up for normalcy
By showing her lost breast, a woman becomes “bad for the morale of the office” claimed the Reach for Recovery woman who gave Lorde the prosthetic right after her mastectomy (Lorde 1992: 60). Cynical as this may sound, a missing breast, the knowledge or even the hint that a woman has undergone surgery, disturbs the normal flow of people and events in everyday life. By covering up her scar with a fake breast, a woman is never forced to face the world with her new body. Maybe she will never become comfortable with her one-breasted image. Using prosthesis encourages a woman to see a mastectomy as merely a physical change, a necessary mutilation that can be easily reconstructed. In this way, the woman postpones facing or preparing for recurrence and/or death (Lorde 1992: 58). In this way, the prosthesis accomplishes the desired illusion of being ‘normal’ (Mitchell & Snyder 2000: 6).
The Reach for Recovery woman comforts Audre Lorde she won’t be able to tell the difference between the prosthesis and her old real breast; but, Audrey says, “I knew sure as hell I’d know the difference” (Lorde 1992: 42). She illustrates how the prosthesis does nothing to address her own sensations or how she perceives herself. Prosthesis and reconstruction reinforce the female stereotype and the wide spread belief in western society that we are what we look like (Lorde 1992: 58). After all, the only acceptable form of female beauty is having two breasts. Although breast reconstruction will not create a ‘perfect replica’ of the breast, it will allow a woman to wear a normal bra or bikini (Lorde 1992: 71).
Covering up potentials for activism
Prosthesis and reconstructive surgery may also impede discussion and support between women, making the breast cancer experience a lonely endeavor for the sufferer.
They act as a mask that silences a woman’s experience, keeping her mastectomy and its cause invisible to others (Lorde 1992: 63). In this vein, Lorde decides not to cover up her difference because she wants to acknowledge it and “share that strength with other women.” She believes that women with mastectomies must be visible to each other in order for silence to become action (Lorde 1992: 62).
The feminist author Diane Herndl, on the other hand, decided to have reconstructive surgery, despite the fact that she was concerned this would bring silence to her difference. To make up for this silencing, she promised she would talk about her experience, admitting later that this was a compromise (Herndl 2002: 152). She describes, for example, her visit to her cosmetologist and true to her promise, she started talking about her breast cancer: she told her about her suffering, her scars, her pain and her addiction to narcotics. By sharing her experience, she hoped to give voice to cancer and create awareness. Her good intentions were neutralized by the cosmetologist who, after listening to her illness narrative, told her without hesitation: “Get your breast reconstructed.” It would have been redundant on the part of Herndl to tell her that she did have an artificial breast, but still the memory of the suffering has not vanished. Herndl began to question if she had done the right thing by having reconstructive surgery. “Had my belief that the voice could belie the visible been self-delusion?” (Herndl 2002: 152). Her experience shows how although some women may succeed in giving voice to the cancer experience, having prosthesis makes the process of building support networks slower.
The above-discussed themes are internalized norms in our western society: the focus on the individual body aesthetic and sexuality is hegemonic. Today, women of financial means or with good medical insurance policies, both in Greece and the US, who undergo mastectomies have far more sophisticated options for reconstructive surgeries than women of my grandmother’s generation. Aesthetically beautiful breasts are now crafted by cosmetic surgeons to provide assurance to women that their sexuality is not destroyed, and that everything is normal, including cancer. In this quest for the perfect substitution of the cancerous breast, the attention of physicians, patients, and the public-at-large gets sidetracked from the discussion of cancer causality to individual aesthetics. Lorde mentions a CBS news special in which a doctor spoke against reconstructive surgery and suggested that the procedure might also be carcinogenic itself; he described reconstruction as an unfortunate choice between life and femininity (Lorde 1992: 42). Lorde also discusses how the first information linking plastics to carcinogenesis began entering the news. She was very ahead of her time when she envisioned one-breasted women marching to Washington demanding the abolition of plastics in our consumer goods and foods. Instead, women now march asking governments for more research, for more scientific ways to fight the disease and reconstruct it, not to prevent it. One-breasted amazons are the new activists who demand ways to normalize cancer rather than abolish it. Consequently, any discourse about the causes of breast cancer are obscured and demands to normalize the consequences of breast cancer and mastectomy are always inconclusive and without definite results. Margaret Lock (1998) has analyzed the same trend in cancer risk assessment rhetoric, by showing how the discussion on ‘risk’ and probabilities renders cancer epidemiologically risky, but not scientifically dangerous. Prosthesis and reconstruction is yet one more example of the efforts of the modern world to normalize cancer.
By way of conclusion, I would like to take the above argument to its cultural level and propose that aesthetic reconstruction also creates a new form of a ‘conspiracy of silence’ in the biography of cancer. In the past, physicians and patients avoided talking about the disease, and a mantle of mystery surrounded the illness. During my fieldwork in Greece, I continually marveled at the inventive ways of Greek family members to explain to a cancer patient what he/she is suffering from: all actors are involved in a conspiracy of silencing the word ‘cancer’. In contrast, the modern cancer patient in the US is proud of handling openly her diagnosis and treatment, empowered by the knowledge and options that science provides. Therefore, it is quite remarkable to see how people are still conspiring to construct a silence about cancer in Greek families. On the one hand, it is rather encouraging that, independent of scenarios of silence, women are now able to survive the disease and are creating opportunities to lead normal lives. They seem to be thankful they have more options than my grandmother did. They are thankful they don’t have to sing in the shower to forget of the horrible scar that reminds them of death. Parenthetically, however, we should mention that the inequality in the distribution of the benefits of western medicine remains striking. What happens to women who live in the not privileged places of the world? What happens to a cancer stricken one-breasted woman in the Amazon rainforest and what kind of options are available to her? Breast cancer has indeed become a global phenomenon, and activism aspires to bring both early detection and reconstruction to all women in the globe. The rhetoric of philanthropists and feminists is that of equal access to a normalizing way of dealing with cancer, rather than thinking of it as a ‘dread disease.’
My grandmother internalized the stigma of cancer by keeping her lump a secret and by not going to the doctor before it was too late. Perhaps the fearful rumors of the total mastectomies performed during her era kept her from consulting a physician. In the culture around her, cancer was thought to be a disease brought by fate or maybe a curse, or even the punishment of God, and the ill wish of an enemy. All disease stigmatizes the patient, but cancer’s stigma stems from the ugly and painful death it brings. Cancer patients in the past did not survive long enough to have to deal with their appearance and sexuality. Now that modern biomedicine offers women a chance to survive breast cancer and keep it from metastasizing, it would be inhuman not to offer women things to make them feel better. But it is also imperative to be reminded that cancer does not come from God as punishment anymore. There are specific reasons and scientific explanations for carcinogenesis that are implicitly and sometimes explicitly concealed. It is my hope that future breast cancer activism would concentrate on causality and prevention rather than early detection and beautification. For the eyes of the anthropologist, both early detection and reconstruction are the luxury of the few. In addition, by reconstructing and concealing cancer, physicians, patients, and society-at-large are silencing the true face of the dread disease. Audrey Lorde envisioned breast cancer activism demanding to learn the causes of the disease. Instead, she was given the option of reconstruction and silence. The potential to reconstruct the cancerous body offered my medical technology is a new ‘conspiracy of silence’ which perhaps conceals efforts for true discourses about cancer in contemporary society.
Anastasia Karakasidou was born in Greece and studied chemistry, archaeology, and anthropology in the U.S. She holds a Ph.D. from Columbia University (1992), and she conducted her dissertation fieldwork in Northern Greece. Her book Fields of Wheat, Hills of Blood: Passages to Nationhood in Greek Macedonia, 1870-1990 (University of Chicago Press, 1997) is a historical ethnography that offers an analysis of nationalism and ethnic rivalry in the Balkans. Since 2001, Karakasidou is researching, writing and teaching on the topics of health, illness and cancer. She has conducted multi-sited ethnographic research in the Chinese province of Yunan, in the Greek island of Crete, and in the town of Wellesley, Massachusetts. She is working on a book entitled “Cultures of Cancer,” which aspires to interpret the history, narratives and social experiences of cancer in these three societies. She is an associate professor of anthropology at Wellesley College. E-mail address:firstname.lastname@example.org
Deanna Trakas and Simon Craddock Lee hold my deepest gratitude since they urged me to work on this paper and challenged me to make it better. Thanks also to the editors of this special volume, Alexander Edmonds and Sjaak van der Geest, who generously helped me on the text and graciously included it in their publication.
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