Book Review — “After the Cure: The Untold Stories of Breast Cancer Survivors”

After the Cure” by medical historian Emily Abel and medical sociologist Saskia Subramanian is an important contribution to the understanding of survivorship, not as an identity so much but as a lived experience. it is about life after cancer treatment ends (if it ends) and the lingering or latent side effects. While some cancer centers have survivorship programs, most people receive treatment in communities without these resources. They leave active treatment and feel like they are, as The Wall Street Journal describes, “walking off a cliff.” Abel and Subramanian explore why this may be the case.

The authors interview 74 women treated for breast cancer who have no evidence of disease (NED). “Cured” at the time of the interviews, twelve women did develop recurrences (when the cancer comes back) later on. The accounts in the book, however, reflect the period when these women were no longer in active treatment. They describe long-term post-treatment side effects that cover the spectrum of debilitating fatigue, weakness, nerve damage, pain, memory loss and/or inability to concentrate (i.e., chemo-brain), insomnia, lymphedema, headaches, arthritis, loss of sex drive, emotional difficulties, and other symptoms. Rather than embodying the identity of the thriving survivor, an accumulation of diverse symptoms along with a lack of information and support gave these women the sense that they were alone, voiceless, and that “their bodies and minds were falling apart.”

The women in “After the Cure” describe health practitioners who view post-treatment complaints only in terms of the cancer itself (i.e., testing for cancer presence or progression but failing to consider other causes of difficulty such as the side effects of treatments. Some believed that their doctors were genuinely annoyed with them. One woman said, “It was like, okay we saved your life, now leave us the hell alone.” The pressure to survive beautifully, “beat” cancer, and “get back out there” seemed to suggest to these women that their difficulties would diminish if they just had the right attitude. When their problems did not go away, this mind-over-matter sentiment got them prescriptions for counseling or anti-depressants instead of help in getting to the roots of their problems.

As a result of physical and emotional difficulties some women could not work or needed to cut back substantially. Others had no choice but to keep working or providing family care and did so with little to no support, only compounding their challenges. Ongoing side effects typically led to a withdrawal from work and social activities all while dealing with the burdens of medical appointments, bills, insurance problems, altered relationships, and physical and emotional suffering. Expecting none of this–because they thought they would get treatment and get back to normal–these “survivors” felt isolated and silenced.

The experiences described in “After the Cure” are not uniformly bleak. They contain elements of personal transformation as women learn to live with vulnerability and uncover inner resources. They also value the people in their lives who are willing to walk with them on the cancer path.

But it stands out in this book that the women interviewed had very narrowed lives as a result of treatment effects but also from inadequate social support and cultural ideals that place a heavy burden on people to overcome adversity. The authors conclude that, “expectations of cure produce a deep current of suspicion about chronic health,” which in turn contributes to shame about lingering health problems and diminished assertiveness in demanding accommodations and support. The authors argue for a dismantling of the structures and ideals that encumber the lives of all disabled people (p. 142).

The study was funded in part by Susan G. Komen for the Cure.

After the Cure: The Untold Stories of Breast Cancer Survivors, by Emily K. Abel and Saskia K. Subramanian. NYU Press, 2010. 208 pp. ISBN: 978-0814707357

Breast Cancer Consortium founder Gayle Sulik is a social science researcher and writer affiliated with the University at Albany (SUNY) Department of Women’s Studies. With expertise in medical sociology and interdisciplinary community research, her scholarship has focused on medical consumerism, technology, cancer survivorship, health policy, and specifically the culture and industry of breast cancer. She is author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (Oxford, 2011) as well numerous articles, essays, and book chapters on health and medicine.

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