Ellen Leopold, author of Under the Radar, answers some questions about her new book, which explores the connection between cancer and the cold war. -Elizabeth Christman
In the preface to your book, you state that “Devotees of the history of cancer, though steadily gaining in numbers, still remain more of a coterie than a crowd among contemporary social scientists.” (x) Why do you think that is the case?
Cancer is a much more complex disease than, say, polio or cholera. It is, in fact, an unwieldly collection of diseases rather than a single illness (and even individual cancers can involve several kinds of mutations). Its story, in other words, is not simple. So it cannot be addressed globally the way something like cholera can be. But more importantly, cancer is still with us; it will kill half a million Americans this year. This deprives studies of cancer of the feelgood factor that historians of polio can draw upon to round out their narratives, bringing a sense of closure and accomplishment to a tale of misery and death. Writing—and reading—about cancer requires a tolerance for indeterminacy and an acceptance of the limits of medical science that many people cannot easily muster. And because it is still such a live issue, cancer also courts controversy, among scientists, practitioners and patients. This complicates the angle of retrospection with which historians approach the past; there is still no clear consensus to use as a guide in reconstructing a path to ultimate enlightenment. So our approach must, perforce, remain oblique.
After learning of stories like that of Irma Natanson’s experience with cancer and doctors, have your views of the medical community and its practices changed? If so, in what ways?
Irma Natanson’s experience did not really surprise me. It took place, after all, in the dark days before Betty Friedan, before second-wave feminism, before cancer was ever spoken about in polite society. But while a great deal about her situation has changed over the past fifty years, there is quite a lot that remains fundamentally unchanged. And this primarily reflects the fact that cancer still kills, an outcome that is often as baffling and discouraging to doctors as to their patients.
Even today, how many patients are really ever in a position, following a serious diagnosis, to wonder (or ask) the right questions about the history of any recommended treatment and its presumed effectiveness? Patients have been coached (by health columnists and others) to ask how many times a surgeon has performed a particular procedure. But this is quite different from asking about the procedure itself. If a physician is recommending it, obviously he or she wants to present it in the most favorable light possible, expressing (explicitly or otherwise) a prejudice that does not always work to the patient’s advantage.
I know that recent books have encouraged patients to hold their physicians to higher standards, to ask more searching questions that will reveal more about their own medical experience and their therapeutic preferences, to insist on a second opinion, etc. But I feel strongly that this is not the way to go. Asking more of the patient just adds to the burden of a serious diagnosis and cloaks the limitations of medical science under the appearance of shared decision-making (if there were truly painless, safe and effective cures for cancer, exchanges between doctors and patients could be short and sweet). In any case, wishing for more proactive patients is unrealistic as well as unfair; only a tiny percentage of those seeking medical attention will ever feel sufficiently well informed, confident or capable of throwing down any kind of gauntlet to their physician. A much greater percentage of the population has no regular access to a physician of any kind, let alone a cancer specialist (seven percent of African American women with breast cancer receive no treatment whatsoever).
My book tries to suggest that it might be more realistic to look for change outside the doctor/patient relationship. As the history of radiation suggests, the factors that determine what (and how) treatments come into common use go well beyond the problems of gender bias or professional authority and beyond medical science as well. We might do better to think more creatively about the forces determining cancer policy at the national level rather than clinging so tightly to the individual experience (this is why we need more books that go beyond personal narratives). In other words, we need to approach the subject as engaged citizens rather than simply as patients (who have enough to worry about). I would like to re-cast contemporary cancer controversies as something as worthy of the public’s attention as stem cell research, abortion, climate change or any scientific/medical issue whose politics have been explicitly recognized. If electoral candidates are expected to take a stand on these other issues, why shouldn’t they also be asked to take a stand on the direction of public investment in cancer? It will, after all, soon overtake cardiovascular disease as the number one killer of Americans. Shouldn’t the public be able to know whether candidates support research into/control of environmental toxins and, if so, how they would go about facilitating such change? Shouldn’t they also tell voters how much money they accept (or reject) from Big Pharma? Holding politicians as accountable as the medical establishment could well generate the kind of public debate we need to change the framework of our thinking about this disease.
Do you think that patients in the future will continue to be as compliant to the suggestions of their doctors, regardless of their own concerns about certain treatments, as some have been in the past?
I think the individual’s response to a cancer diagnosis will continue to be governed by metaphors. Whether absorbed consciously or not, inherited from a family member or picked up iatrogenically (through discussions with a doctor), cancer metaphors will inevitably persist. Some people will continue to believe that they must “fight fire with fire,” certain that only the most toxic treatment can offer them any chance at survival. Others, reacting to a diagnosis as to a bite by a venomous snake, will insist that speed is the determining variable—“I don’t care what is involved, just GET IT OUT!”—as though cancer can be plucked or sucked out, at a stroke. Still others envision cancer as a slow corruption from within. For the fatalists among them, death might be viewed as inevitable, construed as “god’s will” or the “wages of sin.” But the same image could just as easily be construed as a relatively benign and indolent condition, one that permitted long-term “peaceful coexistence” with its host.
The jumble of associations will persist. But I think those most closely linked to cancer as an emergency (likened to drowning or choking or fleeing a hungry bear), will be most likely to abate while those that conjure up cancer as a chronic (rather than an inevitably fatal) disease will gain ground. As cancer becomes more integrated into the national conversation, patients will become more savvy because they will be better informed about the politics and economics of the disease well before they ever become patients. This will fortify them, allowing them to recognize the dynamics of treatment regimes, to realize that they are all essentially working compromises, in a state of flux, subject to a wide range of competing interests, both medical and non-medical (cancer specialists and Big Pharma, for instance). In other words, they will have a better understanding of the interconnectedness between cancer medicine and the industries that support it just as we now have a better understanding of the links between lobbying and the legislative process.
Working against these gains in awareness will be the increasing use of tailor-made and/or “targeted” cancer therapies that may be very seductive. They are emerging as the latest “breakthrough.” Some might be easily swayed by the promise of these novel treatments, well before much is known about their effectiveness or their possible risks. Their departure from the more standardized treatment regimes might make them hard to resist and could easily push to one side their status as “experimental,” a designation that, in light of what I have written in this book, should raise the alarm “procede with caution!”
In what ways do you think that this book contributes to other analysis of the Cold War and/or cancer debates in America?
This book is something of a maverick in that it tries to bring together two subjects which have had little, if anything, to do with one another and which may appear to be very strange bedfellows. There is, in fact, little actual “debate” in any discussion of cancer that reaches the public and that, I think, is part of the problem I’m addressing. The controversies that exist--about the direction of and returns on investment in cancer research—are aired largely behind closed doors, in the scientific community. Most Americans don’t understand that the cancer treatments we have today reflect specific choices and prejudices made quite a while ago. The literature on cancer focuses almost exclusively on the personal experience of individuals and, for the most part, goes nowhere near these issues—or anything controversial for that matter. There are books that focus on the politics of individual cancers that do challenge the status quo but they are less interested in the secular evolution of attitudes that have shaped national cancer policy. So this book represents something of a departure because it pulls away from more traditional narratives and goes after undercurrents of cultural history that have resisted easy analysis but that may be widely applicable. A lot of it is speculative, making connections that are difficult to document with absolute authority. I hope it will stimulate others to look further, to take some of the threads I’ve begun to weave together and subject them to even greater scrutiny. The important thing is to consider cancer as more than the history of disease, to see it more as part of the broader, secular history of postwar America than as an esoteric subject for medical historians on the one hand or patients on the other. Cancer needs all the help it can get.
I hope this book will reinforce the steady work of others who are more directly engaged in the process of changing our thinking about cancer policy. I would like to encourage movers and shakers to expand their horizons, to consider the adoption of alternative benchmarks beyond those that measure minor improvements in cancer incidence or survival. I would also like to convince them of the need to take a more inclusive view of environmental harm. I would like the idea of true prevention (rather than chemo-prevention) to be taken much more seriously, to be visible in policy debates, to be pursued in well-funded research, to be represented at the highest levels of the NCI and NIH and to be considered in Congressional legislation. Anything this book might do to raise the legitimacy of cancer prevention as a strategy of equal importance and urgency as treatment and “cure,” would be most welcome.
This is your second book on cancer, your first being A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century. How did you get drawn to studying it?
I had breast cancer in 1990 and joined the Women’s Community Cancer Project (WCCP) in the same
year, hoping, among other things, to find answers to questions raised by my own treatment. I quickly realized that the existing literature on the subject was extraordinarily limited in scope. There were personal memoirs but no social histories of breast cancer written for patients. Nor were there books that attempted to link cancer to wider issues of health care politics. Jean Hardisty, one of the founder members of the WCCP, shared my concerns. We decided to write an article for a local woman’s journal (Sojourner The Women’s Forum) about the double burden for women of cancer and poverty. This was the first thing I ever wrote on the subject and appeared in December 1992 (it has since been reproduced in a book of essays called Myths about the Powerless, Temple University Press, 1996).
What are you working on now?
At the moment, I am working as a consultant on a proposal to establish, in London, a museum for the history of women and medicine in a hospital named for the first woman physician in Britain (Elizabeth Garrett Anderson).
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