There are two books that lay out what the mutations are, what the risks are, and what the options for risk reduction are: Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny by Sue Friedman, Rebecca Sutphen, and Kathy Stielgo and Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi Morris. If a BRCA+ woman decides to explore her surgical options, Kathy Stielgo’s The Breast Reconstruction Guidebook is priceless. These three books are required reading for BRCA+ women, and gene therapists should hand out copies of both these books to women who’ve just tested positive for a deleterious mutation (as opposed to the flimsy photocopied brochures featuring soft-focus women looking thoughtfully into the middle distance that I received with my results).
In addition to these informative medical books, there is a whole niche industry devoted to the BRCA+ memoir. I realize that many women find reading and writing these memoirs to be an emotionally satisfying experience. But I don’t. I’m not particularly interested in reading about individual women’s experiences of being BRCA+ in book form. There are many great BRCA+ blogs and youtube channels that detail individual experiences, and I’d rather read those. YMMV.
Instead, I’m looking for a big picture perspective on BRCA mutations. I want to know about the history of their discovery, about the scientists who found them, how they fit into the larger breast cancer medical industry and the history of breast cancer. I want to know what previous generations of women faced when they received a breast cancer diagnosis, how far we’ve come since then with medical advances, and how far we haven’t come since then. I want some hardcore cultural analysis of BRCA mutations, the risks women face, the environmental factors that contribute to growing rates of breast cancer, the surgeries available, and the pre- and post-surgery risky body. I want critical treatments of BRCA+ discourse and the BRCA+ community. And yes, I want to see feminist takedowns of the patriarchal medical industry as it relates specifically to high risk women. Whereas memoirs take an intimate look at the lives of women with mutations and their struggles, I want to contextual my own struggles within larger social, political, and economic spheres.
So far, my attempts to locate this sort of analysis haven’t fared well. Gayle Sulik’s Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health and Samantha King’s Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy take a good look at the many problems with pinkwashing and dominance of Komen in the breast cancer community. I recommend both of them. As far as history goes, Barron Lerner’s The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America did a really good of laying out the heartbreaking realities that women with breast cancer have faced in the United States since the late nineteenth-century, but the chapter on BRCA mutations and gene testing was off-putting (that’s a whole other post).
Maren Klawiter’s The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism is next on my To Read list. Other suggestions are very welcome.