WOMEN WITH CANCER WANT MORE CONTROL Rensselaer Researchers Document Breast Cancer Survivors Who Call For Policy Reforms
TROY, N.Y.- Women with cancer want increased control and better information about their treatment options, concludes new research by David Hess, professor of anthropology at Rensselaer Polytechnic Institute. The research, funded by the National Science Foundation, is documented in a new book titled, Women Confront Cancer: Making Medical History by Choosing Alternative and Complementary Therapies (NYU Press), which includes a series of interviews with 21 women with cancer (mainly breast cancer.)
"These interviews are political documents in the struggle for women's increased control over their bodies and the availability of diagnostic and therapeutic options," says Hess.
Many cancer survivors attribute their success in overcoming the disease to designing their own course of treatment by opting for alternative and complementary therapies. Some women are tumor free as a result of their treatment options; some are still confronting disease. The women interviewed are among the opinion leaders in the intersecting worlds of cancer advocacy, the women's health movement, and alternative/complementary medicine.
"Historically there has been very little questioning of the fundamental premises of cancer research and the resulting new therapies," says Hess. "The interviews in this book carry valuable lessons for the politics of breast cancer, cancer in general, and women's health issues."
About one-third of cancer patients report they have used some form of alternative medicine, such as meditation, hypnosis, food supplements, or diet and exercise programs, according to a recent study. Women Confront Cancer documents an integrated approach that blends conventional and complementary therapies, according to Hess.
The book focuses on four groups of therapies that fall into two groups: nutritional and metabolic: dietary, supplements (antioxidants, cartilage, soy products), nontoxic immunotherapies (bacterial vaccines, laetrile, anti-neoplastons), and herbal (hoxsey formula, essiac tea).
The interviewees call for rights that go beyond "informed consent" to include better information about and evaluation of treatment programs that combine the best of both worlds.
Most interviewees advocate putting together a complete program of therapies (nutritional and metabolic, meditation, de-stressing, psychotherapy), which, when used in conjunction with conventional therapies such as surgery, results in a more holistic approach to healing.
The book points to fundamental medical policy matters, such as providing sufficient funds to evaluate nontoxic (or less toxic) alternatives that might provide some answers that have eluded cancer researchers for decades. As patients learn more about the disease, Hess says, the ethics of medical practice will change.
"There is a critical mass of women who can provide the necessary leadership to reform the cancer agenda," Hess says. "Overwhelmingly they are calling for better information about conventional, alternative and complementary therapies, and for the rights of each woman to choose a mix of modalities that suits her disease and life circumstances. The book is about choice; it advocates getting more information to patients about options they often do not know they have."
"The leaders of the advocacy movement have a sophisticated understanding of the limits of conventional cancer treatments, particularly radiotherapy and chemotherapy," says Margaret Woodell, a Rensselaer researcher and graduate student who conducted most of the interviews
Hess and Woodell's research was funded by a National Science Foundation grant to examine public understanding of science in the alternative cancer therapy and research community.
A companion book by Hess, Evaluating Alternative Cancer Therapies, will be published by NYU Press in 1999 and another planned volume will focus on male patients who have used alternative therapies.
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