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closeThe ubiquitous pink ribbon is intended to symbolize support for finding the cure for breast cancer. The pink ribbon gracing the cover of “After the Cure: The Untold Stories of Breast Cancer Survivors” hints at a different meaning.
The familiar satin takes the expected loop around, but leads to a tattered end. Emily K. Abel, professor of health services and women’s studies at the University of California and a breast cancer survivor, describes her post-treatment experience and the struggle to find medical explanations for the lingering side effects of her therapy.
Her care in 1993 held the promise of a return to life the way it was before cancer. Although Abel’s physicians explained her overwhelming fatigue as being a symptom of depression, her talks with other cancer survivors revealed similar experiences, along with a score of other post-treatment concerns.
It wasn’t until Abel met medical sociologist Saskia K. Subramanian that she posed her questions as a research topic. That premise, “how women who have completed breast cancer chemotherapy and radiation cope with ongoing problems that doctors fail to take seriously,” struck a chord with Subramanian, whose own mother had succumbed to the disease.
The results of this study, funded by the Susan G. Komen Foundation, were published last year by the New York University Press. Participants consisted of 36 black and 38 white women, who were interviewed from one to three hours.
Despite the small sample size, these researchers explored important questions and acknowledged the challenges their study faced. When survivors detailed problems, there was no way to determine whether symptoms were related to breast cancer treatment.
Abel and Subramanian fail to put these challenges into a sociological context, as we cannot exclude the influences of our fractured health care system.
Rising expenses, insurance constraints and the needs of the unand underinsured butt up against advancing technologies for diagnostics and treatments that remain unavailable to all.
Cancer treatment has been so focused on the emergence of life-prolonging treatments that the movement is only now giving rise to the challenge of long-term survivorship.
This is complicated by a society that tends to see all problems as having solutions, considering illness a linear course, rather than the true starts and stops that can define a chronic disease.
Additional questions that should be raised about this qualitative research study are the bias reflected in their core question, that doctors fail to take ongoing problems seriously. As the women’s physicians were not interviewed, it may be presumptive that problems were not seriously considered.
Their recruitment methods allowed women to self-identify, which the authors acknowledge may have skewed the sample.
This work does highlight the medical inequities due to race and socioeconomic status. It also cites a broad variety of other studies that are valuable to the topic of survivorship. One is from the Institute of Medicine and National Research Council’s “From Cancer Patient to Cancer Survivor: Lost in Transition” (2006). This seminal work is having an impact on cancer programs across the country, which are beginning to create long-term survivorship programs to deal with the unique needs that are now recognized as sequelae of cancer treatment.
This compelling work questions what it means to “cure” disease and should be of interest to the medical community, cancer survivors of all types and those who face medical symptoms that cannot be validated by traditional means. These authors are marking a new developmental phase of cancer care that may lead affected persons to seek partnership with their physicians to combat the long-term side-effects of cancer and its treatments.
Aileen S. Galley, ACSW, LSW, is administrative director at the Penn State Cancer Institute at Mount Nittany Medical Center.
In Print
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