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The introduction is meant to lay the groundwork for a deep and empathic understanding of breast cancer as viewed "through a social lens." Lenses can magnify, but they can also distort. The editors insist that the social view supersedes rather than supplements the biomedical one, noting that we are "moving away from the biomedical model of disease toward a social model of illness." In doing so, the authors create a false dichotomy, a situation once referred to by Justice Felix Frankfurter as the "cross-sterilization of disciplines." The social perspective is important enough that it does not need to be presented as an alternative to the biomedical one.
The book's editors take some cheap shots at medicine, saying, for instance, that Vincent DeVita "was willing to do away with breast cancer study sections" when he was the director of the National Cancer Institute. Did he do so? Were grants for research on breast cancer treated better or worse in the study sections to which they were transferred? The editors also attack another unlikely target when they write that "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." Well, it ought to be clear, and the editors should have found out how much money has been spent rather than casting aspersions in the absence of data.
In a pretentiously titled five-page section, "What is known about breast cancer," the editors focus on ethnic and socioeconomic differences in breast-cancer incidence and survival but do not mention recent evidence of genetic vulnerability to certain types of breast cancer. There is a page devoted to "sexuality differences," about the important issue of lesbian women with breast cancer, but there is no mention of the fact that men also get the disease. The editors have a clear agenda to "promote positive social action." How well does the book succeed?
In one chapter, Lerner argues that breast cancer is a social construct, approvingly citing Charles Rosenberg: "A disease does not exist until society decides that it does -- by perceiving, naming and responding to it." This statement invites the obvious rejoinder that women (and some men) died of breast cancer for thousands of years before anyone knew what it was. The statement represents an epistemological confusion between the thing known and the act of knowing. Lerner goes on to review the often-troubling history of the Halsted radical mastectomy and cites two medical pioneers, George Crile and Oliver Cope, who challenged the procedure. Bernard Fisher's crucial work with the National Surgical Adjuvant Breast and Bowel Project showing evidence of early systemic spread is also mentioned. Lerner notes that it was a combination of medical "whistle-blowers" and increasingly activist patients that forced a reexamination of the needlessly disfiguring approach. Thus, history teaches that biomedicine and social forces can, and indeed do, often complement one another.
Ferguson decries the "medicalization" of women's experience, "such as childbirth, premenstrual syndrome, and menopause." She understandably attacks the popularity of breast-augmentation surgery, but goes overboard by claiming that "small breasts have been labeled as `diseased' by members of the medical establishment." The reference she cites is a critique of the medical establishment, not evidence for the claim. Ferguson ignores the reality that physicians have in fact "medicalized" the inappropriate concern with body appearance -- for example, with the diagnosis of "body dysmorphic disorder" now included in the Diagnostic and Statistical Manual of Mental Disorders. This diagnosis describes the inappropriate preoccupation with minor physical abnormalities. Furthermore, the social sanctioning of the alteration, even the disfigurement, of women's bodies antedates any medical involvement with such practices: foot binding in China, neck bracelets in Africa, and tattoos are but three examples. "By suggesting that reconstruction is a natural part of breast cancer treatment," writes Ferguson, "physicians contribute to the belief that women with one or no breasts are unnatural." Is medical neglect better than this kind of attention? Although many of the patients with breast cancer I have known have chosen not to have reconstruction, I do not know one who resents having the option available to her. Ferguson cites Marcia Angell, a former editor of the Journal, in a rather odd way, using her to document a connection between studies of the safety of silicone breast implants and manufacturers. In fact, Angell has vigorously attacked what she perceives as exaggerated claims of the dangers of breast implants, and her book on this topic was not cited, although several other works of hers were. Angell's position is much better summarized in Rosser's rather strident chapter on "Controversies in Breast Cancer Research," although here Angell is attacked for being too biomedical and insufficiently feminist. In addition, Rosser's discussion of tamoxifen could easily mislead readers because she does not point out that breast cancer is far more common than uterine cancer, so even a small reduction in the risk of breast cancer could well be worth a larger percentage increase in the risk of uterine cancer.
Shaffer contributes a forceful chapter on changes in the health care system that is all the more powerful for its emphasis on fact and economic analysis and its lack of ideology. Shaffer's review of regional disparities in the proportion of the lumpectomies performed in the United States is disturbing, and her clear-eyed analysis of the loss of control over choices of treatment in the new system of managed care applies far beyond the realm of breast cancer. She has a way of summarizing complex issues lucidly, stating, for example, that "it is clear that the market does not reward competition based on quality." She adds that "the market is not an adequate system for achieving systemwide reorganization in the interest of coordinated services.... This is hard news for the health-related corporations that siphon off 30 percent of every health care dollar for administration and profit." Amen.
Zones provides an indictment of the industry forces that overemphasize benefits and minimize the risks of breast-cancer treatments. But she overlooks the real clinical problem: what makes sense from a statistical perspective for a large population may not be the desired or best solution for a given person with breast cancer. Patients want the most vigorous treatments with the best possibility of cure, even if the incremental advantage is small. The limitations of current treatments are well described, but the criticism is not equally distributed. Zones cites a 1984 book by a prominent advocate for patients with breast cancer in claiming that "most of the time, oncologists do not even see their patients during regular, routine appointments" and that they are therefore not concerned with the side effects of treatment. This is not true, and the references Zones cites do not offer evidence for the claim. Similarly, she later refers to a book and a Greenpeace report to prove that "radiation causes about 75 percent of new cases of breast cancer in the United States." Would that she were as critical of the data she likes as she is of the medical profession.
There is a lot of anger in this book -- at doctors, at companies, at social attitudes -- and it is understandable. Some of the targets are appropriate, but some of the anger would be better directed at the disease itself and at its intimation of mortality, as compellingly described in the chapter on women's experiences. "I compare it to being raped, actually," says one woman. "You go through the process of trying to escape, trying to deny it. And then you say, `My God, I really have this. This is really happening to me."' This chapter also provides important information about the value of support groups in helping women to normalize an abnormal experience by discussing it with others who are in the same boat. It ends with a touching epilogue written by and about a woman who died. She called her disease what it was -- a "tragedy.... I've lost some of the carefreeness of youth. I feel older. There's some regret. There's also a lot of peace. Bittersweet." Brenner also provides a compelling history of the recent development among women with breast cancer of groups for mutual support and political action.
Kasper documents telling examples and studies of the adverse effects of inadequate or substandard care offered to poor women with breast cancer. Weisman provides an excellent overview of recent policymaking regarding breast cancer at the federal and state levels, including a balanced and thoughtful summary of the pros and cons of a single-issue focus on breast cancer. Steingraber gives us a fact-filled and well-written brief for a fuller consideration of the role of environmental toxins in breast-cancer incidence. Fosket and colleagues review the discussion of breast cancer in women's magazines and note correctly that there is a fine line between teaching responsibility (for breast self-examination, for example) and blaming the victim.
The editors' conclusions combine useful recommendations with wrong premises and ideals that are beyond our grasp. They state that "a male-defined, biomedical, scientific world... has little interest in understanding breast cancer." This is pure nonsense. They then go on to recommend prevention rather than treatment as the goal of research. Prevention has always been the stepchild of medicine -- the benefits are theoretical, and we are still faced with the obligation to treat those for whom prevention has not worked. Clearly, the prevention of breast cancer is a consummation devoutly to be wished. Until it is achieved, scapegoating the men and women who devote their lives to treating those with the disease will get us nowhere. There are good recommendations in this book, including a call for universal health insurance, more research on possible environmental causes of the disease, and the telling of the stories of women who struggle with the disease but die of it, not just those of the "victors." The best outcome will come from empathy for those with breast cancer and their families, trenchant criticism of the data and methods we now have, and respect for the men and women who research and treat the disease.
David Spiegel, M.D.
Copyright © 2001 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.