Opinion articles

Thursday, September 30, 2010

ONLINE FIRST: I'm a 'Previvor'




Women in my family die young. My grandmother Sylvia died at 43, her sister Pody at 45, my mom’s only cousin Gail 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—found her cancer had metastasized to her bones, and within months, was told she wouldn’t survive. I was pregnant with my second daughter at the time, and I remember feeling as if the floor beneath me had dropped away.


At first, we all believed that my mother’s cancer was its own, isolated tragedy, disconnected from the disease that had claimed her mother, aunt, and cousin. But within months of my mother’s death, we learned we were wrong. The diseases were linked after all—and there was a very strong chance my sisters and I would inherit the risk of developing one or the other, if not both.


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 the word “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.


What’s the Right Decision?

What’s the right decision to make when (or if) you learn you carry a high risk for developing a given kind of cancer? That question haunted me for years. Finally, I decided I needed to write about it.


In my new book, What We Have, I really wanted to bring to life the contradictory range of emotions that accompany these questions. 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 does not necessarily render you a “victim.” I chose preventative surgery in my 30s—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 for me. 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 go a long way to improve the lives of families living with difficult choices, and in doing so, make the experience of ”previving” a little less lonely.


Adapted from a piece that first appeared on the Women's Conference forum website.



AMY BOESKY, MPhil, PhD, is Associate Professor of English at Boston College.


Her new book, What We Have (Aug 2010, Gotham Books, ISBN 1592405517), is a memoir about her family’s experience with BRCA1. Further information is available at her website www.whatwehave.org