A Darker Ribbon: A Twentieth-Century Story of Breast Cancer, Women, and Their Doctors

Overview

The first cultural history of breast cancer, this book examines the social attitudes and medical treatments that together defined the modern relationship between women with the disease and their doctors. At the heart of the book are two unpublished correspondences-one between Barbara Mueller, a woman diagnosed with breast cancer eighty years ago, and her surgeon, William Steward Halsted, father of the radical mastectomy, and the other between Rachel Carson, who was writing Silent Spring as she was battling breast...
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Overview

The first cultural history of breast cancer, this book examines the social attitudes and medical treatments that together defined the modern relationship between women with the disease and their doctors. At the heart of the book are two unpublished correspondences-one between Barbara Mueller, a woman diagnosed with breast cancer eighty years ago, and her surgeon, William Steward Halsted, father of the radical mastectomy, and the other between Rachel Carson, who was writing Silent Spring as she was battling breast cancer, and her personal physician George Crile, Jr.
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Editorial Reviews

From the Publisher
I would recommend [this book] to anyone . . . as a truly engaged social history of a curious, melancholy, and, until now, untold chapter in medical history. -Katherine A. Powers, The Boston Globe

"Why did it take most of the twentieth century for breast cancer to move from being viewed as a disease that affected women to a woman's disease? How do we explain the stubborn reluctance of American women to understand breast cancer as a feminist issue? Leopold's answers to these questions, along with her skillful attempt to fill a historiographical void in the breast cancer literature, make for engaging reading." -Regina Morantz-Sanchez, The Women's Review of Books

"The apposition of Barbara Mueller's interaction with Halsted and Rachel Carson's with Crile is compelling and poignant." -Jerome Groopman, The New York Times Book Review

"A Darker Ribbon is an invaluable tool and a powerful call to arms."
-National Women's Review

"A path-breaking inquiry into the sociopolitical history of cancer writ large. . . . Read the book as a story about how the cancer establishment got the active support of the American population, and you've got a new window on twentieth-century medical history." -Deborah Stone, The American Prospect

Booknews
Leopold (writer and member of the Women's Community Cancer Project in Cambridge, Massachusetts) evaluates contemporary ideas and attitudes about breast cancer, describing their historical and political antecedents and focusing on the relationship between the medical establishment and breast cancer patients. Annotation c. Book News, Inc., Portland, OR (booknews.com)
Jerome Groopman
At the core of ''A Darker Ribbon'' are the remarkable letters of two women with breast cancer, Barbara Mueller, a New York woman in her 50's, and Rachel Carson, the author of ''Silent Spring.'' Mueller, a patient of Dr. Halsted's, corresponded with him between 1917 and 1922, when she died of the disease. In 1960, Carson, who was dissatisfied with the care she had received, sought out Dr. George Crile Jr. of the Cleveland Clinic, one of the earliest surgeons to oppose the radical mastectomy. They exchanged letters until her death, in 1964. Bracketing the correspondence is an analysis, in Leopold's words, of the ''sexual politics'' of breast cancer...The apposition of Barbara Mueller's interaction with Halsted and Rachel Carson's with Crile is compelling and poignant.
The New York Times
Regina Morantz-Sanchez
Leopold's analysis is not necessarily new, but it adds another dimension to our disillusionment with the late twentieth-century politics. In the end, health lobbyists for women in the next century may be increasingly dependent on their ability to link up up with a revitalized Left, one capable of implementing a productive critique of an increasingly ineffective political and selfish economic power structure that is ever more insensitive to the needs of all its constituents.
The Women's Review of Books
Deborah A. Stone
How, you might wonder, can a surgeon convince a brilliant, constitutionally skeptical scientist that she doesn't have cancer - after he's done a mastectomy on her? One reason why everyone should read this book is to find out.
The American Prospect
Kirkus Reviews
A cultural history of breast cancer that focuses primarily on how social acceptance of the unequal roles of men and women has impeded progress in a woman's disease. Leopold, a writer on women's health issues for the Chicago Tribune, the Nation, and Self magazine and herself a breast cancer survivor, examines the social dynamics that have shaped contemporary attitudes toward breast cancer. She looks closely at the interaction between male physician and female patient as a key aspect of that dynamic. Besides giving the larger picture, Leopold includes an intimate closeup through revealing correspondence between two articulate women and their doctors. The first set, spanning the period 1917–22, is between a compliant woman, Barbara Mueller, and the famous surgeon William Steward Halsted, who developed the radical mastectomy procedure that was the standard treatment for breast cancer for most of this century; the second set, 1960–64, is between Rachel Carson, who had undergone the Halsted procedure, and George Crile, a trusted friend and surgeon from whom the noted scientist and writer sought advice when her own surgeon lied to her about her disease. Leopold notes that real changes in social attitudes toward the disease and in the biomedical approach to it were slow in coming. Nevertheless, the taboos against public disclosure were gradually lifted, notably in women's magazines. The rise in breast cancer consciousness developed for the most part, she finds, outside the feminist movement, with women volunteers drafted by the male-dominated American Society for the Control of Cancer (later the American Cancer Society) to spread its message about the benefits of early detection. Attention isalso given to the impact of the National Cancer Act of 1971, First Lady Betty Ford's breast cancer in 1974, and the subsequent appearance of the first nationally known breast cancer advocate, Washington Post writer Rose Kushner. Now that women are involved, Leopold seems to be saying, things are looking up. A feminist approach to history for which the most appreciative audience will be found in women's study courses.
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Product Details

  • ISBN-13: 9780807065136
  • Publisher: Beacon
  • Publication date: 10/28/2000
  • Edition description: None
  • Pages: 224
  • Product dimensions: 5.90 (w) x 9.00 (h) x 1.00 (d)

Meet the Author

Ellen Leopold is a member of the Women's Community Cancer Project in Cambridge, Massachusetts, and has written breast cancer and women's health-care articles for The Nation, the Chicago Tribune, and the Boston Globe, among others.
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Read an Excerpt




Introduction


Figuratively speaking, the breast has probably been the most overworked organ of a woman's body since time began. As Marilyn Yalom demonstrates in her wide-ranging survey, A History of the Breast, everyone seems to have a claim on it. Men and women are aroused by it, artists represent it, poets apostrophize it, babies are nourished by it, fashion and commerce fetishize it—and disease afflicts it. All of these responses to the breast, including the last one, are conditioned, if not wholly determined, by the culture in which they operate. The breast attracts so much attention and is a site of conflict for so many of society's values and beliefs that it often seems not to belong to a woman at all.

    Writing on the subject reinforces this sense of a woman's alienation from her own breasts. It ranges from the obvious to the obscure, from the history of breastfeeding and wet nursing in different countries and different centuries to the use of the breast in political propaganda. All of the recent writing has brought to the fore the contributing role of culture, highlighting the impact of the dynamic but elusive set of values governing society at any one moment. This has given us a richer, if less determinate, view of human history. Society, we have discovered, is too intricate and too dynamic to reconstruct with anything approaching a sense of closure. There are simply too many forces at work for anyone ever to have the "last word."

    Breast cancer, however, as a subject for social historians, has not been part of this burgeoning literature. The liberating effects ofSusan Sontag's Illness as Metaphor, published in 1978, and of James Patterson's The Dread Disease, published a decade later, have not completely lifted the embargo on the disease (or on cancer of the lung or prostate, for that matter). These are cancers whose deadliness has, if anything, increased over the course of the century (lung cancer was virtually unknown in 1900). Yet the histories of these diseases remain unwritten.

    In the case of breast cancer, the void in the literature stands in stark contrast to the extremely visible and voluble presence of the disease in contemporary culture. Breast cancer may not yet have a well-documented past but it certainly has a vibrant present. There is no public forum now in which breast cancer is not at home. It has been taken up as a cause by celebrities of all stripes (politicians, entertainers, sports figures) and its problems are thoroughly and regularly aired in all media. Pink ribbons adorn the chests of thousands of Americans, a measure of the success of the breast cancer activism of the 1990s. There is hardly a community in the United States that has not participated directly in some fund-raising or consciousness-raising event organized by groups of women at the local, regional, or national level.

    At the heart of this success are the two million American women who live with breast cancer today (including myself). For many of us, breast cancer is no longer a medical emergency but a chronic condition, one we may live with for the rest of our lives. Our interest in the disease may remain as intense as ever but it is no longer so urgent. We can now afford to broaden our outlook, to consider the social and political dimensions of the disease alongside its immediate impact on our individual lives. But if breast cancer activism has provided an outlet for our concern for the future of the disease, the available literature on the subject has made no attempt to gratify our curiosity about its past.

    How is it that a subject so utterly taboo, for so long, has become so commonplace so quickly, taking up residence in every cultural medium, from soap operas to sculpture? And what made the stigma surrounding the disease so powerful to begin with? These are questions that have not yet been addressed. But it may be that the cumulative impact of two million women and the repercussions of their experiences, whether as private individuals or as activists, has finally generated a critical mass of interest in a longer perspective on the disease. As a demobilized army in reserve, restored to normal life (at least for the time being), these women provide an impressive counterweight to the more traditional image of women stricken with this illness, succumbing without demur to a deadly enemy. Their active and often committed lives are a reminder that death from breast cancer, although it still cannot be dismissed, may now at least be delayed.

    This small shift in the balance of power may be just what was needed to make a social history of the disease finally possible. Of course whatever is written today, before the end of the story is known, will soon reveal its limitations. This makes its bias very different from those evident in the histories of vanquished killers like typhoid and polio. There can be no triumphalism here, no retrospective selection and highlighting of just the right set of clues that, quietly gathering momentum despite false starts and setbacks, lead the story to its elegant conclusion. A history of breast cancer told today will, on the contrary, betray a clear lack of a unifying thread. But the open-endedness it offers instead has some advantages as well. The tangled and inconclusive story lines can be more closely investigated, not for their contribution to the ultimate cure but for their contribution to the evolution of modern breast cancer "culture." Lacking the narrative drive of a history of disease that is racing forward to meet its appointment with destiny, the story of breast cancer can afford to move at a slower pace, taking the time to linger in some unproductive cul-de-sacs, to gain in texture what it loses in plot. Its story, in other words, cannot be rushed or compromised by the so-called benefits of hindsight. Its indeterminate status also provides an opportunity and an open invitation, as the writers of literature on AIDS have demonstrated, to readers themselves to play a role in determining the final outcome.

    Until now, breast cancer as a subject has been orphaned, separated from the mainstream literature of history and sociology, just as the experience of the disease itself has been cordoned off from society, a private experience suffered by women individually, at the margins of public consciousness. Outside of medical journals, writing on the subject has been limited, both in its output and in its scope. Before the 1970s, it could be found in the pages of medical histories, primarily. Written largely by medical men, these histories made no concessions to culture whatsoever but traced the changing odds between men and mortality as though they arose from one extended experiment carried out under laboratory conditions. Since women, in these renderings, were no more than carriers of disease, they rarely appeared as actors in the drama.

    Over the past few decades, two newer genres have arisen that have turned these histories upside down, not only introducing women into the story but placing them at the center. These are the personal narratives of illness written by breast cancer survivors (like Betty Rollins First You Cry) and the self-help manuals written largely by medical professionals (with Susan Love's Breast Book, first published in 1990, perhaps the best-known example). Many of these books are hybrids, combining both approaches. Almost all of them focus, for the most part, on the immediate needs, practical and emotional, of the recently diagnosed woman.

    The sharp discontinuity between the earlier medical commentaries on disease and the current outpouring of memoirs is jarring. The first are written exclusively by men and largely for men; the second almost exclusively by women and largely for women. The first takes a very long perspective on history; the second, none at all. In one it is disease itself that provides the thread of continuity; in the other it is the individual consciousness of the writer. But if there seems to be little to connect the genres, they do share one critical attribute: a complete disregard for the determining influences of society and culture.

    This book is an attempt to supply that missing perspective. Stepping back for a moment from current controversies and taking a longer, retrospective look reveals a great deal about the derivation of contemporary attitudes toward the disease. These, it turns out, can be traced back to ideas and habits of mind that have been around for decades, if not for centuries. We have no conscious connection to any of this past, of course, because until recently the history of breast cancer has been subject to the same unconditional prohibition as has the discussion of most other aspects of the disease. Personal narratives have been more acceptable, not just because they provide immediate comfort to the newly diagnosed woman but also because they pose no challenge to the status quo. Cut off from both history and politics, they make no effort to explain the long-term failure of medical science to prevent or cure the disease. Their goals are short-term, immediate, and aimed at individual readers, not at society at large.

    Written history, on the other hand, may be less immediately instrumental but its long-term implications are just as significant. Contemporary beliefs about and attitudes toward breast cancer do not simply mirror contemporary cultural themes or medical views. They reflect instead the markings characteristic of any disease of great antiquity, the scarred remains of earlier attempts to rationalize, pacify, or deny an enemy that could not be subdued. As long as the disease survives, traces of all the myths or superstitions it ever conjured up will cling to it, however discredited they may be. Only a cure or, ultimately, prevention, can ever really lay them to rest, once and for all. Until then, our response to breast cancer will continue to reflect the defeat of every strategy—offensive or defensive—that has ever been put up to contend with its perennial deadliness.

    The unequal contest to date between clinical medicine and virulent pathology has, in the case of breast cancer, been aggravated by the dynamics of inequality between men and women, expressed primarily through the doctor/patient relationship. Echoes of nineteenth-century beliefs still hover over this pairing as well, despite the solid efforts of feminism to dispel them. Here too, as long as breast cancer retains its power to kill, every encounter between a male doctor and a newly diagnosed woman re-creates the necessary conditions for inequality, no matter how enlightened either or both partners in the drama may be.

    It is the interaction between these two struggles—the first between medical science and the biology of breast cancer, the second between the men who, for most of history, have dictated the terms of this struggle and the women whose disease has occasioned it—that gives this history its distinctive features. Breast cancer has inevitably brought the two historical strands into close proximity, with variable results. At times, their joint impact has been a regressive one, paralyzing or prejudicing scientific research, medical treatment, and public awareness. At other times, it has been more innovative, opening up some new perspective on either the behavior of the disease or the behavior of the women who are vulnerable to it. Catalysts for change in one sphere have indirectly spurred change in the other, although sometimes after considerable time lags and with unexpected effects. In the pages that follow, I have attempted to pull apart and examine the dynamics of these two themes, at least partly in the hope that a closer inspection might help to broaden our understanding of current controversies, whether among activists, historians, or interested noncombatants.

    The book uses a combination of case studies, correspondence, and commentary to document both the continuity and the complexity of the changes that have led to a public candor in the handling of the subject. The groundwork for this approach has been laid over the past two decades by important work on the impact of nineteenth-century medical theory and practice on the lives of women. Feminist revisions of the history of the doctor/patient relationship have also played an important role. I have been fortunate in being able to apply this scholarship to the early history of breast cancer and, with this foundation, to move the story forward into the uncharted waters of the twentieth century.

    Although a great deal of medical history does appear in these pages, the book does not set out to provide a thoroughgoing social history of treatment in the twentieth century. There is little coverage, for instance, of the long-term pattern of access to medical care among different groups of women, nor of the history of the medical institutions (hospitals and clinics) providing that care. Although women physicians have obviously had an impact on breast cancer treatment, this is mentioned only briefly. The possibility of being treated by an all-women team of physicians—surgeon, radiologist, oncologist—has only quite recently become a reality and remains an exceptional rather than a common occurrence. For most of the period covered in this book, women physicians constituted a significant if quite small minority of doctors (about 5 percent up to the 1970s). The history of government intervention in the fight against cancer is also given little space. Rather, the story told here is based on a selective analysis of those aspects of the social history of the disease that have, in my opinion, contributed most over the past lOO years to the patient's understanding of and response to it. So although this book proceeds in a loosely chronological order, it is organized thematically rather than along a straight narrative path.

    This means that the 100-year career of the radical mastectomy, which remained the primary treatment for breast cancer for most of a century, plays a prominent role in the pages that follow, while chemotherapy, a relative newcomer in the treatment arsenal, does not. It also means that more attention has been paid to the role of sexual politics in shaping the perspective of the medical profession as a whole than to the unquestionable skills and compassion of thousands of individual practitioners. The prejudices of society may have a powerful impact on the practice of medicine but it would be hard to argue that physicians have consciously contrived to do harm rather than good. They have not. The generations of surgeons who strove to "perfect" the radical mastectomy were operating in good faith on scientific principles as they understood them. The history of breast cancer treatment, therefore, cannot be portrayed as a conspiracy against women, although women have often been poorly served by it. Their responses, after all, have been shaped just as much by their cultural milieu as have those of the physicians who treat them. The intention here is not to cast blame but to identify the underlying cultural ideas at work, in order to understand why they have had such different consequences for men and for women.

    I should also add that I do not want to minimize the benefits of the treatments that medicine in the first 75 years of the century made available. Undoubtedly, they kept a great many women alive. My criticism of radical surgery in this book is directed more toward those factors (not, strictly speaking, either medical or scientific) that served to prolong clinical dependence on a misguided model of disease. Resistance to change unquestionably slowed the pace of progress while continuing to subject thousands of women every year to unnecessarily disabling surgery. My retrospective impatience with this loss of momentum is perhaps more excusable in the context of a search for a cure that is, alas, still ongoing.

    Every disease has its own history. What makes each one unique is the particular way in which, as the writer David B. Morris has expressed it, the biology of a disease intersects with the culture in which it appears. The biology in this case has turned out to be fiendishly complex, compared with, for example, the biology of polio or of smallpox. Breast cancer is a cluster of intractable, adaptable, and unpredictable diseases that originate in human breast tissue (male and female). Their furtive biology has marked the nature of scientific and clinical responses to the disease every bit as much as it has influenced the interactions between physicians and patients. But this fact tends to get lost because the "science" of breast cancer is simply too esoteric, requiring a grasp of a body of knowledge that lay beyond the reach of most "students" of the disease. Although this book emphasizes the social rather than the scientific response to breast cancer, it does try to examine some of the ways in which medical science and practice have accommodated the peculiarities of its biology.

    For a variety of reasons, breast cancer, as a disease within American culture, has seemed to pose much less of a threat to society than many other diseases, such as polio or AIDS. It is a disease of women (rather than of men or of children) and also a disease of women who are, typically, past their childbearing years (the risk of getting the disease at 60 is more than 100 times greater than it is at 30). It is not contagious. It is not, properly speaking, an epidemic, felling masses of people at once; it is more a disease of individuals. Also unlike an epidemic, it does not suddenly appear and just as suddenly depart but remains steadily, relentlessly present. It does not, in fact, appear at all but remains offstage, hidden away from public view.

    All of these characteristics tend to deprive the disease of the high drama evoked by epidemics. Epidemics mobilize an immediate and widespread public response, summoning all the skills, practical and precautionary, that can be made available through agencies of public health. Everyone is caught up in them. Inevitably, they are attention-grabbing and make headlines. The opportunities they offer for both tragedy and heroism make media coverage of them irresistable. Not surprisingly, the paper trail they leave behind has made them popular with medical historians. But, as the historian of medicine Charles Rosenberg has written, chronic diseases, those that take up permanent residence in the culture, may play "a more fundamental social role ... than the dramatic but episodic epidemics of infectious disease that have so influenced the historian's perception of medicine; we have paid too much attention to plague and cholera, too little to `dropsies' and consumption." I would add breast cancer to the list of historical wallflowers. As a disease that sets off powerful if poorly understood reactions to female sexuality, its history has much to tell us about American society's long-term accommodations to the physical and emotional needs of women.


* * *


The book is divided thematically into three parts and moves forward in loosely chronological order, from the end of the nineteenth century to the end of the twentieth. Chapter 1 thus begins by examining the sexual politics of the disease at the end of the nineteenth century. The views then current on the role of women within the traditional American family play an important part in shaping the social response to breast cancer. Particularly relevant are society's changing expectations of women as they age and as their relationship to reproduction alters. Medical attention in the late nineteenth century, reflecting the imperatives of society at large, concentrated almost exclusively on the preparation of girls and young women for the consuming roles of motherhood. Because symptoms of disease in postmenopausal women played no role in the dynamic of social reproduction, they attracted much less attention.

    Symptoms of disease in younger women were another matter. Any who chose to deviate from the prescribed path of marriage and motherhood, who hoped to be educated or employed or even to experience the pleasure of exercise or dancing, would suffer bodily punishment for their transgressions. This would be meted out to them, not in the form of a whipping or any other form of physical torture but in the form of disease, brought on by their own disobedience, according to the wisdom of prevailing medical authority. Breast cancer in a young woman was only one of many such expressions of disfavor.

    But breast cancer was not a manufactured disability, unlike so many of the "female ailments" dreamed up by nineteenth-century doctors to preserve women's inferior status. It was a real killer, and one that compromised the very femininity that Victorian culture worked so hard to preserve. The failure of existing medical science to cure or even to "manage" the disease led eventually to its disappearance from family physicians' areas of competence. Its corresponding absence from the popular medical literature of the time documents the lack of enthusiasm for treating the disease among family physicians charged with the care of female patients.

    But the decline in the involvement of family physicians (and early gynecologists) just before the turn of the century was met and no doubt abetted by the corresponding rise of surgery to a position of undisputed authority in the treatment of breast cancer. Chapter 2 discusses the wide implications of this change. The increasing availability of surgery was a mixed blessing. It meant that many more women suffering from painful symptoms of disease in the breast could now be treated. But it also meant that more women submitted to treatment that exacted a terrible toll on their bodies. By the turn of the century, the radical mastectomy, as refined by William Stewart Halsted, first professor of surgery at Johns Hopkins, had become the "gold standard," and survival rates following surgery appeared to improve. But the apparent success of radical treatment had as much to do with the benefits of earlier detection, a more careful selection of surgical candidates, and improvements in anaesthetic and pre- and postoperative care as with any curative powers of the surgery itself.

    Part Two illustrates the standard treatment at work. It reproduces two correspondences, each between a breast cancer patient and her surgeon, each running from diagnosis to death. The shift down in scale from the abstract discussion of Part One allows a more intimate look at the individual experience of breast cancer and at some of the smaller-scale consequences of the ordeal that are inevitably lost in the broader historical narrative.

    Both women in these correspondences underwent Halsted mastectomies, the first performed by Halsted himself in 1917, the second more than forty years later. Their letters, covering the periods 1917-22 and 1960-64, represent, both chronologically and thematically, a dead center in the history of breast cancer as I have construed it. The half-century spanning the years from the beginning of the first correspondence to the end of the second marks a kind of steady-state in the social and medical management of the disease, a static plateau in which few new ideas or expressions of dissatisfaction were allowed to disturb the prevailing dogma. The treatment of breast cancer set in place by Halsted and his students remained fundamentally unchanged throughout this period.

    The two women patients were educated and articulate and both were determined to play an active role in the management of their disease. The first, a woman we will call Barbara Mueller, had been born in 1867 and was in paid employment at the time of her diagnosis. The second woman was the scientist and writer Rachel Carson (author of Silent Spring), who was exceptionally well qualified to participate in such a correspondence. The two surgeons, William Stewart Halsted and George Crile, Jr., were equally prominent in their own field. Born about fifty years apart (Halsted in 1852 and Crile in 1907), their working lives spanned a century of breast cancer treatment (1880s to 1980s) that was dominated by the radical mastectomy. Halsted was the surgeon most responsible in the United States for the almost universal use of this procedure. Crile, after the mid-1950s, became one of its most vociferous detractors. (Halsted practiced medicine at a time when surgery constituted the only treatment for breast cancer. By the end of Crile's working life, radiation and chemotherapy, including hormone therapies, had reduced surgery to only one among many alternatives.)

    Whatever improvements had taken place in the refinement of existing therapies between the 1920s and the 1960s had not reduced the death rates from metastatic disease. On the contrary, breast cancer deaths continued to rise. Barbara Mueller may have thought that the radiation treatment she sought but failed to obtain could have kept her alive. But the more powerful and more accurate radiation available to Carson decades later did not save her either. How was it possible that so little progress had been made, that scientific research and clinical practice seemed to have lost their forward momentum during all these years?

    Part Three begins to answer this question. The evolution of the medical response to the disease, which lay at the heart of Part One, is now joined by the history of women's participation in the disease experience. The story of breast cancer in the twentieth century is as much about the assimilation of women into the establishment culture as it is about the pace of medical progress. Once the basic treatment paradigm (radical surgery) had been put in place and became more readily available, its position could only be consolidated with the active support of the population it was designed to serve. The battle for the hearts and minds of women, as it turned out, was far easier to win than any battle against biology.

    Physicians realized early on that women had to be educated to accept treatment for breast cancer. In particular, they had to be rescued from the paralyzing fatalism that cancer often evoked. They had to become patients, to demonstrate, by their willing submission to treatment, their absolute faith in the therapeutic value of surgery. In 1913, the American Society for the Control of Cancer, the precursor to the American Cancer Society, was set up by physicians to achieve just this transformation.

    With no mandate (or funds) to undertake research, the fledgling society was neither well placed nor encouraged to evaluate the effectiveness of the treatment it advocated. What it was set up to do was to influence public opinion. This it achieved through massive public relations campaigns that sought to bring women to treatment as expeditiously as possible, by reassuring them, in the words of a much-used slogan, that "in the early treatment of cancer lies the hope of cure." The fact that women continued to die even after being treated was never addressed. Surgeons were cast as heroic lifesavers, rescuing women from the brink of death; women were profoundly dependent upon their intervention and grateful for it.

    As Chapter 5 documents at some length, the combination of early detection and early treatment, first set in place by the education campaigns of the cancer charity, has been this century's stand-in for genuine cure or prevention. It has been kept alive, over most of the period, by regular transfusions of new technology. The steady improvement of diagnostic techniques has repeatedly given it a new lease on life as incidence and death rates from breast cancer continued to rise. The American Cancer Society, the original mastermind of this strategy, has never faltered, over three-quarters of a century, in its promotion of early detection. Their unwavering support has had a disproportionate influence on the public's awareness and understanding of the disease as well as on the strategies adopted by smaller, local organizations committed to similar goals.

    From its beginnings, women themselves became the primary purveyors of this message as well as its beneficiaries. First mobilized by the American Society for the Control of Cancer in the late 1920s, the high point of their voluntary participation occurred ten years later when they were recruited on a national basis into the ASCC's newly formed Women's Field Army. Enlisted in their thousands, these women raised the operating income for the parent organization while they leafleted, broadcast, and delivered the message of early detection to American womanhood. In other words, the campaigns traded on and reinforced all of society's sexist expectations of woman: that she take responsibility for her own health without forgetting her responsibilities for others and that she carry out, on an unpaid basis, the labor-intensive strategies that were drawn up by medical men but packaged as serving not their "best interests" but her own. The dilemma set in place by this dynamic would prove to be a hard one for feminism to crack.

    Feminism may not have been ready to resolve this impasse but, by the time of Rachel Carson's death in the mid-1960s, it was poised to make its presence felt in other areas of American society. Chapter 6 returns to the sexual politics described in Part One but this time reexamines them in the context of the women's health movements of the 1960s and 1970s. The strategies pursued by the early birth control and abortion campaigns were centered on health issues dominated by society's obsessive concern with control over reproduction. For better or for worse, breast cancer fell outside that magic circle. Of course, there were important aspects of the earlier health campaigns that provided essential underpinning for the later development of breast cancer awareness (primary among them, the rise of feminist consciousness with its insistence on a woman's right to control her own body).

    But the objectives of the earlier campaigns, and the strategies pursued to advance them, differed widely from those the breast cancer movement would adopt years later. The earlier emphasis, for example, on legislative change and legal doctrine were of little use to women seeking to alter the outcome of a disease, not a debate. The involvement of the courts in defining access to abortion also created alliances between feminists and reform-minded professionals (legal and medical) that were not available to breast cancer activists. A closer look at some of these discrepancies may help to explain the apparent head start that the crusades for birth control and abortion enjoyed and the long interval that elapsed between their coming to maturity and the first stirrings of breast cancer awareness.

    Chapter 7 documents, at a more detailed level, the actual emergence of breast cancer within the culture over the past fifty years. It interweaves changes in the way the disease has been portrayed in various media with changes in the biomedical approach to it. Although it is impossible to pin down with any precision the way these two interact, it is clear that increasing attention paid to both the culture and the science of breast cancer has had the synergistic effect of raising the visibility of both. By the early 1970s, there is sufficient interest for the disease to establish a beachhead within the culture.

    Its arrival at this juncture is documented by tracing, primarily in print media, the gradual loosening of male control over the representation of the disease. It begins with the first testaments in women's magazines in the 1930s, 1940s, and 1950s, where women's stories, often told by male doctors, served primarily as a cover for public health warnings promoting early detection and early treatment. When women finally begin to tell their own stories, they are still heavily chaperoned by medically credentialled men (sometimes their husbands, sometimes their doctors). Women's magazines played an important role in this history. They provided not just an opportunity for women to describe their own ordeals but a platform for those few pioneer doctors with "heretical" ideas about treatment. These ideas may have reflected their patients' preferences (for less extensive surgery), but they were anathema to the rest of the medical profession and so failed to gain admittance to the pages of prestigious medical journals.

    By the time Betty Ford's breast cancer was announced in 1974, Americans had been well prepared for the sudden burst of interest in the disease. The concurrent emergence of the first breast cancer activist, Rose Kushner, points the way to the mass movement of the future but, in the 1970s, it remains at a distance. Rose Kushner's work, challenging the authority of surgeons and the wisdom of standard practices, did not fit the prevailing notions of cultural acceptability. The lack of widespread political or even feminist endorsement for many of her initiatives inevitably delayed their entry into the mainstream. As an introduction to what was still a controversial subject, the personal narratives of women with experience of the disease were preferred by American women over the wide-ranging political program—and the anger—of Kushner.

    Part Three ends with a discussion that steps back from the detailed history of the earlier chapters to evaluate the overall shift in consciousness since the early 1970s and its implications for the future. It argues that the mainstream perspective we now bring to the subject did not originate in any feminist or progressive program for social change but grew instead out of the time-honored tradition of female volunteerism. This has meant that the radical aspects of breast cancer activism have had to be grafted onto an inherently conservative tradition, one that passively accepted unequal roles for women and men. As a result, the sexual politics of breast cancer have been until recently poorly understood.

    We have had little incentive to understand the disease as an expression of the culture (including politics and the economy) at large. We have not been encouraged to think of breast cancer as an integral part of the history of twentieth-century medicine and its institutions. Rather, in keeping with its origins, contemporary awareness of the disease has been defined more by the accumulation of individual life stories than by any wider understanding. This bias toward the individual experience has, in turn, influenced the nature of contemporary debate on the subject, defining both its scope and its point of view.

    If the experience of breast cancer through most of the century could be characterized as wholly "private," it could now more aptly be described as "privatized." If the disease has not yet lost its stigma, it has certainly shed the secrecy that once isolated every woman caught in its web. But open recognition of the disease has not been accompanied by any sense of social responsibility for it. Yes, women have mobilized in the thousands in breast cancer coalitions across the country to increase the level of research funding at the national level. And, yes, they have effectively broadcast their dissatisfaction with the scarcity and quality of research into women's diseases. But the burden still falls largely on their shoulders. Every one of the 180,000 American women diagnosed each year is still individually responsible for getting herself screened, biopsied, treated, and monitored. And those lucky enough to escape a positive diagnosis (this time) are, equally, burdened with the responsibility to maintain their disease-free state (through so-called lifestyle modifications like diet and exercise). These are the symptoms of an implied social policy that, in the absence of an effective cure, emphasizes the individual rather than the social control of disease.

    The sense that progress toward prevention has stalled is neatly conveyed by the recent transformation of the role of surgery. Once the universal treatment for this disease, the therapeutic role of surgery has now been surpassed by its cosmetic potential for women undergoing a mastectomy. Over the past quarter century, the refinement of surgical techniques using the patient's own skin and muscle to reconstruct a breast have produced astonishing results. So adept has plastic surgery now become that the local control of disease by mastectomy not only paves the way for the return of the sacrificed breast, but also provides open-ended opportunities for cosmetic enhancements that extend to the other breast as well. The lure of cosmetic makeovers, coming at a time when a newly diagnosed woman is most vulnerable, is understandably powerful. But the decision to go down that path postpones recovery for months. The succession of operative procedures that follow keep a woman "medicalized," adding further layers of risks and complications to those already associated with the disease. And all without improving her odds for survival one bit.

    Any improvement in the survival rates that can be squeezed out of existing therapies is more likely to come from chemotherapies than from surgery. But the ultimate source of breast cancer prevention remains unknown. There is still little sense that society as a whole has thrown its weight behind the eradication of the disease, as it did in the 1950s in the national assault on polio. Instead, there is, as there has always been, pressure on women themselves to play a more active role in cancer control. There is, for example, discussion of personal responsibility for breast cancer (through so-called lifestyle modification) but not of public or corporate accountability (through the control of toxic substances), of cures for the disease but not of prevention, of public dollars allocated to research but not to health care services.

    These limitations reflect the concerns and priorities of contemporary culture. But they also reflect the failure of breast cancer to make common cause with broader political interests, either in theory or in practice. Perhaps a greater understanding of the influences that have shaped contemporary awareness of the disease (as developed in this book) can help to deepen its connections in the next generation with other movements for social change.


* * *


The nineteenth century's response to breast cancer may have had a powerful impact on the handling of the disease in the twentieth century but the picture drawn in this book of the actual experience of breast cancer a hundred years ago will be unfamiliar if not absolutely foreign to many women afflicted with the disease today. What has been outlined here is the experience that might have been familiar, at least in part, to white middle-class and upper-middle-class women living any time between the 1850s and 1950s. But for many others—self-supporting women or women who lived without men, poor women, single mothers, many minority and working-class women—the experience of breast cancer bore little resemblance to the story told here. Most of these women never had the luxury of a decline into semi-invalidism. For all of the twentieth century, for instance, a much greater proportion of Black than of white women in the United States were employed (both married and unmarried) and they were working for lower wages. The same was true for other ethnic groups (Japanese-and Chinese-Americans among them). Many of these women never had any medical treatment for their breast cancers at all simply because they couldn't afford to pay for it. But many others stayed away because they feared or distrusted the mainstream medical establishment. The practice of medicine did, after all, incorporate all of society's prejudices, elitist, racist, and homophobic, as well as sexist. Women whose race or sexuality or poverty was deemed by prevailing medical opinion to be deviant or pathological were hardly likely to expose themselves to the scrutiny of a white male doctor.

    But despite the discrepancy between the lived experience of many women and the prescribed cultural response, there are still grounds to justify the centrality of the white middle-class experience. First of all, middle-class cultural values may not have monopolized society's response to the disease but they exercised a disproportionate influence over those giving and receiving treatment for it. By the end of the nineteenth century, most doctors in the medical mainstream were largely middle-class husbands and fathers. Middle-class wives and daughters constituted their clientele. This doubling of domestic and professional roles provided endless opportunities for the crossover of sexual politics between home and office. In both locations, the oppression of women expressed itself in a bodily submission to male authority. In both contexts women were considered to be physically at risk if not overtly ill. Encounters in one sphere simply reinforced those in the other, strengthening the impression that the paternalism underlying both was part of the natural order of things. A middle-class doctor could not fail to bring his prejudices to bear on any encounter with a woman patient, whether educated, indigent, or self-supporting.

    An even more important rationale for the dominance of the white middle-class perspective is that breast cancer, perhaps uniquely among women's diseases, struck most often among just this group of women. Having children at a later age and having fewer children increased a woman's overall lifetime risk for the disease. And the image of the cosseted unproductive wife was, statistically, not inaccurate. At the turn of the century, when almost 40 percent of African American women were already employed outside the home, only 3 percent of white married women had jobs of any kind.

    White women also enjoyed a significant advantage in life expectancy. Black women in both the north and the south died at younger ages than white women. If the life expectancy for American white women at the turn of the century was around 49, just the age when women began to enter a high-risk zone for breast cancer, then many Black women were simply not living to be old enough to contract the disease. The life expectancy for white women at birth (just under 8o years) still remains significantly higher than for African American women (just under 74).

    In any case, breast cancer as a recognized disease of its own was hardly noticeable at the turn of the century. The estimated number of breast cancer deaths in the United States in 1900, based on the census, was about 3,780, roughly 3,330 deaths among white women, 380 among Black women, and 80 among white men. Recognized and recorded cancer of the breast among white women was still a rarity; among Black women it was, statistically, almost insignificant (among white men, it was totally invisible).

    White women continued to account for the vast majority of breast cancer deaths through most of the century. As late as 1950, the death rate for African American women was still about 22 percent lower than for white women. It was not, in fact, until the early 1980s that mortality among African Americans first outstripped that for white women. So the view of the illness as a predominantly white middle-class experience in the early decades of the century when the modern medical response to it was put in place, though it needs to be qualified, does seem to have some justification in historical fact. There was, in any case, little recognition before the 1970s or 1980s that the actual experience of breast (and other) cancers might be significantly different for minority women; for the most part, they have had to face the same set of attitudes and the same options confronting the majority population. The prominence given to the white middle-class experience in this book does not excuse the lack of attention paid to the Black or any other minority experience of breast cancer, then or now. The dearth of sufficient evidence—records, narratives, statistics—is the illustration of yet another social and institutional failure for which redress needs urgently to be made.

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Table of Contents

Acknowledgments ix
Introduction 1
Part One
1 The Prehistory of Breast Cancer 23
2 The Dominance of Surgery 45
Part Two
3 "A Really Hideous Mutilation":
THE RADICAL MASTECTOMY IN THE CORRESPONDENCE OF A BREAST
CANCER PATIENT AND HER SURGEON, WILLIAM STEWART HALSTED, 85
4 "A Private Little Hell":
THE LETTERS OF RACHEL CARSON AND DR. GEORGE CRILE, JR ,
1960-64 111
Part Three
5 The Battle for the Breast 153
6 Breast Cancer within the History of the Women's Health
Movements 188
7 From the Closet to the Commonplace, 1945-75 215
8 At the Close of the Century 243
The Last Word: Obituaries 275
Notes 285
Bibliography 317
Index 328
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