After The Cure, a new book by Emily K. Abel and Saskia Subramanian, reflects a collaborative effort by two women whose lives have been impacted by the effects of breast cancer. Abel, a breast cancer survivor, and Subramanian, who lost her mother to breast cancer, decided to research how women who have survived breast cancer treatment have managed to cope with the ongoing symptoms that their doctors have chosen to ignore. Funded by the Susan G. Komen Foundation, interviews were conducted with seventy-four volunteers. From these 74 interviews, the profiles of eleven specific survivors emerged to shape the voices featured in book. After The Cure is a thoughtful and informative account of the trials of breast cancer as well as an eye-opening wake-up call to those who may not have previously considered the reality of what it means to "survive" a disease.
BookZone: Breast cancer survivors struggle not only with chronic symptoms such as severe fatigue, pain and "chemo brain," but also with the fact that their complaints are often dismissed as purely psychological. As you pointed out, since many doctors base their own personal success on their ability to accurately diagnose and treat symptoms, they are often not willing to spend time with a cancer patient whose symptoms are seemingly too vague to pinpoint. For patients who find themselves in this frustrating position, what sort of options -- in terms of getting the attention they need -- are available? Is it enough just to be persistent?
Abel: Many of the women we interviewed either changed doctors or found validation from other survivors. The many organizations of breast cancer survivors also should pay greater attention to the failure of physicians to listen closely to the post-treatment symptoms presented to them.
Subramanian: Persistence is certainly important, and arriving at appointments armed with information from the Web is often a good idea. Some doctors get irritated when patients self-educate via the Internet, but at the very least, doing so can help stimulate a better dialogue between the doctor and patient. Survivors should also, to the extent that they are able, shop for doctors who are sympathetic to their condition. While there is generally little that medicine can do at this juncture to alleviate post-treatment symptoms, there are some palliative treatments that doctors can offer to help relieve some of the discomfort. And finally, I would suggest that survivors with symptoms consider complementary and alternative modes of healing as offered by licensed and reputable practitioners. Many women in our study reported some improvement in quality of life when they combined alternative medicine with their conventional care. There are a few small studies indicating that a range of modalities like massage, acupuncture, yoga, and meditation can prove beneficial.
BookZone: Your book mentions that one of the biggest obstacles that patients face is the fact that insurance companies pressure doctors to see as many patients as possible in as little time as possible. Considering that insurance companies have to assess and more often than not, cover the cost of treatment, what is the reason behind doing business this way and why do doctors go along with it?
Subramanian: I think this is a great question but one better answered by an economist or specialist in the field of the business of medical insurance. I will say that while I abhor the practice of churning large numbers of patients through doctors' offices in short periods of time, I think that individual doctors are powerless in the wake of the demands of insurance companies. Certainly, I have never, ever encountered a single physician who thinks this is an appropriate model of patient care.
Abel: The primary concern of the insurance industry is to limit the reimbursement to doctors for different procedures, not to maintain the health of the population. Doctors minimize the time spent on office visits to maximize their incomes.
BookZone: Ironically, the increased visibility of breast cancer survivors as positive role models has backfired in the sense that the media's generalized portrayal of survivors as strong, capable and resilient women who are ready to bounce back into their regular lives doesn't show the reality of post-treatment symptoms. How might the awareness of breast cancer treatment be better promoted without discouraging the general public?
Abel: Patients beginning breast cancer treatment can be assured that most people do not suffer from serious, long-term side effects. The relentless optimism of the current breast cancer movement denigrates the experience not only of those patients who do suffer persistent symptoms but also of the many who cannot ultimately be cured.
Subramanian: Yes, in the face of the relentless positivism surrounding breast cancer survival, there is a proportion of the population for whom these messages are not appropriate and perhaps even detrimental. Barbara Ehrenreich has a very interesting article ("Welcome to Cancerland") that discusses these issues more broadly, though not directly from the standpoint of survivors who suffer from chronic conditions as a result of their treatment. I think that better public education is needed surrounding the phenomenon of post-treatment symptoms, and it certainly could be done in a way that doesn't diminish the hopes and healing of survivors. In fact, I think one of the strongest messages to come from both our book and the documentary we produced ("Beyond Breast Cancer: Stories of Survivors," the trailer for which can be seen at our book's web site) is that while post-cancer life is not optimal for all, the courage and strength of spirit evidenced by all the women affected by this disease is extraordinary and inspiring.
BookZone: Breast cancer treatment is slowly beginning to change: medical schools are now implementing courses on more personalized patient care; doctors are starting to customize treatment options according to individual patient needs. This attentiveness has been a long time coming. How soon do you think it will be before breast cancer treatment and post-treatment is finally streamlined, becoming ultimately, less debilitating for patients?
Subramanian: Who knows? I'd love to think that is on the near horizon, but I am a little bit more cynical than that, especially since these sorts of improvements in patient care come with a cost. Still, it is a step in the right direction, and certainly we are seeing pockets of such integrated, streamlined care across the country. I am hopeful that issues of quality of life will become of greater import in the coming decades to the larger medical community, especially as more and more people are surviving previously fatal conditions but with attendant chronic conditions.
Abel: Medical researchers will have to answer questions about whether and if so, when, cancer treatment can become less debilitating. As many cancer advocates point out, the greatest need is for increased public commitment to efforts to prevent the disease.
Emily K. Abel is currently writing a history of celiac disease and conducting research on the history of the medicalization of death at the turn of the twentieth century. Regarding her research, she says, "Because I am a medical and public health historian, my current projects are historical."
Saskia Subramanian has been working with the Pediatric Pain Program and the Center for East West Medicine, both at UCLA. Subramanian says, "Each of these centers integrates conventional western medicine with complementary and alternative treatments in order to optimize patient outcomes. It's been inspirational to watch this patient-care model in action, as you can imagine. I am also developing a few more documentary projects that focus on health care issues."
When she is "off-duty," Subramanian likes to read cookbooks, food writing and "good escapist novels, especially mysteries." She recommends Cara Black's Murder in the Marais.
