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Voices: Widening the Conversation Previvor Discourses and the Power of Stories

April 24, 2015

Voices: Widening the Conversation Previvor Discourses and the Power of Stories

by Amy Boesky

My sisters and I grew up inside a family story that felt, for all its power, isolating. On my mother's side, an inherited pattern of ovarian cancer was unmistakable. Her mother, aunt, and first cousin all died of it in their 40s. In the 1980s, my father (a doctor) convinced my mother to have a preventative hysterectomy, and listed my sisters and me in hereditary cancer registries. But so little information was available or shared back then. I found myself describing my cancer risk to doctors. 'Let's talk about your heart,' one said, setting my chart aside.

In 1987, when my mother found a lump in her breast, we were confounded. Breast cancer didn't run in our family!

Surely this cancer was disconnected from the ovarian cancers in our family. Surely she'd survive. When she died, the world changed for me. In 1994 I received a letter from Creighton University Medical Center saying they believed our family had HBOC — my mother's story was connected to the others after all. This was my story, too; one day, it might become my children's.

I'd long planned to have an oophorectomy once I'd had children, but after deciding on prophylactic mastectomies, I wanted advice from other women who'd done this. My doctors provided only a few names; one lone, generous woman came through. She huddled with me in a Bloomingdale's dressing room to show me her results. I was grateful, but strangely ashamed. She was 57, I was 37, and I felt profoundly alone.

So much secrecy surrounded the mutation for me. I stayed silent about it. As an English professor, I taught stories, I didn't share them. Gradually, though, this changed. Was it the realization that each new milestone in my daughters' lives was one my mother missed? Or watching my girls grow up, wondering what they'd face as adults? Or the desire to connect with other women like me? I began to write about my family. I joined FORCE and learned the term for people like me — cancer previvor, survivor of a predisposition to cancer. In 2010 I published my memoir, What We Have, about my family's experiences. As I talked more openly about BRCA mutations, I saw how they (as well as mutations in other genes) have impacted families markedly different from my own.

'I know how you feel,' one woman told me, though in her family, early- onset Alzheimer's is passed down, not cancer. I became fascinated with "previvor discourses" in people beyond the BRCA community. I began to collect personal essays about the impact of genetic mutations on peoples' sense of identity, intervention, and family. In editing these essays, I've realized that the BRCA community often paves the way for others. My interview with Joanna Rudnick, producer of the remarkable documentary In The Family, reveals her commitment to sharing private and public conversations about BRCA mutations. Other essays, including those on Alzheimer's, Huntington's, and Tay Sachs, reveal challenges in testing for and living with difficult hereditary prognoses. Many other rare, "orphan" conditions can be devastating for families — and though their clinical implications vary, there remain common elements in high risk for disease. The HBOC community has much to offer, and the public much to gain, by embracing a wider community of 'previvors' in our conversation.

Author Amy Boesky teaches at Boston College. She has edited a new book, The Story Within: Personal Essays On Genetics and Identity, a collection of personal narratives by numerous writers on genetic mutations associated with hereditary cancer, Huntington's, Alzheimer's, and many other diseases. The Story Within will be published this fall by Johns Hopkins University Press.

Conversations on the Impact of Hereditary Cancer in Our Lives

by Amy Boesky

'Conversation' has several meanings, each illustrating aspects of how personal stories about hereditary cancer's impact on our lives can make important contributions. Collectively, these conversations can lead to positive changes for ourselves, our families, and the wider community.

Conversation and perspective

The word 'conversation' derives from the Latin conversationem (nominative conversatio), the 'act of living with.' What does it mean to 'live with' an inherited risk for disease? Many in our community have lived with (or are now living with) significant disease or high risk. How can we best live with the knowledge of hereditary cancer and its potential consequences? How can we help others who are living with similar knowledge? These questions lie at the heart of conversation, in the best sense of the word. True conversation is about choices, ethics, compassion, and making a difference in the world.

Conversation and family

One definition of conversation is an 'informal exchange of ideas' — private talk that often takes place in intimate circles, such as within a family. How do we initiate a conversation about BRCA with those closest to us? There are no one-size-fits-all answers, but sharing family medical history is vital to helping family members make decisions about risk management for disease.

Conversation and decision-making

Conversation can be synonomous with 'dialogue.' Expanding dialogue — with genetic counselors, doctors, members of FORCE — may alleviate the potential isolation of facing hereditary cancer. Your own questions and responses shape these conversations as much as any information you receive. These conversations may be open-ended, and they may change over time. Almost certainly, they will change you.

Conversation and community

Conversation also means 'living together, having dealings with others'— belonging to a community. FORCE facilitates discussion through message boards; small, local group meetings; and through vibrant national conferences. We all belong to other communities as well — professional, civic, spiritual. Bringing the conversation about inherited risk into these other communities helps to expand the conversation about genetics and identity as it enables others to recognize their health risks and challenges.

Conversation as activism

The root of 'conversation' also implies a 'manner of conducting oneself in the world.' FORCE often urges us to speak out on issues that matter to our community, such as the fight to liberate the BRCA genes from corporate patents (now being deliberated by the Supreme Court). Find meaningful ways to contribute your voice to the tenor of public debate. Stay informed through FORCE updates, start a blog, write an op-ed piece, send a letter to your congressman. Speak up! Your voice counts, and it is needed.

Conversation and change

Finally, conversation is associated with the word 'convertere,' meaning 'to turn around.' Conversations change us. We enter into conversations to be heard, but also to open ourselves to the possibility of being changed. FORCE provides valuable resources and information for us all, but in addition, FORCE reminds us of the value — the need — to widen and deepen our conversations to include others and to listen and be open to the voices of others. Each of our voices is needed in these conversations, and our community grows stronger with every voice shared.

Posted in: Voices , Decision Making
Tags: Prophylactic Mastectomy , Previvor , Prophylactic Surgery , Decision Making , Family Story

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