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"Previving" a Life Sentence Of Hereditary Disease

Health + Fitness

Amy Boesky 250x250
Amy Boesky, Author, What We Have

 

 

 

 

By Amy Boesky

In my family, women die young. My grandmother died at 43, her sister at 45, my mom’s only cousin at 49 – all from ovarian cancer. My sisters and I grew up in the shadow of this disease, determined to do what we could to prevent it. Then, when I was thirty-two, our world was shaken. My mother, who had developed breast cancer despite everything she’d done to take care of her health—including a preventative hysterectomy—had a recurrence, and within months, was told she wouldn’t survive. I was pregnant with my second daughter, and I remember feeling as if the floor beneath me had dropped away.

HBOC—hereditary breast and ovarian cancer—is making headlines now every day. People are rallying for more resources, more education, more debate about such issues as gene patents and corporate control of genetic testing. This new focus, to my mind, is really important. We won’t all agree about these issues, nor should we, but the discussion is essential to shaping the way the next generation deals with hereditary and genetic conditions and diseases.

I think of myself as a “previvor,” a term coined in 2000 by Sue Friedman, the founder and executive director of FORCE (Facing Our Risk of Cancer Empowered). The term suggests survivor, but there’s more in it.  The preface “pre” suggests looking forward, looking out—advocating for what comes next. And sometimes, fighting to prevent it.

I struggled for a long time over whether to write my new book, What We Have, and then—once I knew that I needed to—how best to write it. Instead of an extended family history, I decided to write about one pivotal year in my family’s life—trying to capture the warmth and humor of my sisters and my mother as well as the hard choices we faced. The human side of being a “previvor” is so complex, and so multi-faceted; there’s no prescription here for what to change or how to live your life once you know that your family carries a predisposition for a condition or disease.

But that doesn’t mean you can’t do something about it. The enormous strides we’ve made as a country around breast cancer in the past generation is a reminder that having a disease need not render you a “victim.” I chose preventative surgery in my thirties—both for my ovaries and my breasts—not because I thought it would guarantee me a “normal” lifespan—I know, after watching my mother’s experience, that such guarantees just aren’t there. But choosing to act for me was hugely important. It gave me the sense that I could take steps to reduce my risk. Now, I hope that sharing my experience will be helpful to other people facing some of these choices.

In What We Have, I write that many of my favorite words begin with “pre” -- prepare, prevent. I hope in the coming years, more and more women will take action when it comes to assessing their family’s medical histories, educating themselves and each other, and working to make a space for “previvors” in the national dialogue around breast and ovarian cancer. We can’t make hereditary diseases go away—not yet—but we can improve the lives of families living with difficult choices, and in doing so, make the experience ”previving” a little less lonely.

 

 

 

Amy Boesky, Associate Professor of English at Boston College, is author of What We Have (Gotham Books), a memoir about her family’s experience with BRCA1, the so-called “breast cancer gene.” Visit her website at www.whatwehave.org.

Author photo credit: Mark Karlsberg/ Studio Eleven

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