What’s the origin of the word previvor?
Florida veterinarian Sue Friedman coined the term after realizing that women with a hereditary risk of breast and ovarian cancer needed a word to describe them. She had started a non-profit, Facing Our Risk of Cancer Empowered (FORCE) on New Year’s Eve, 1998, only to find women with gene mutations felt excluded in breast cancer circles. She is both a breast cancer survivor and a BRCA2 gene mutation carrier.
“The medical community was using the term, unaffected carrier,” she recalled in an interview. “It meant you carried a gene mutation but you were unaffected by the disease.’’
Unaffected hardly seemed to be the case, she said.
“As I started meeting more women with the genetic mutation and I saw how they approached the idea of support, kind of apologetically, I thought, we need to unite this community. One of our board members said on our message board, I need a label. I lost my mom to cancer. I lost my breasts to cancer. I lost my fertility to cancer. But I don’t have cancer. What am I? So we actually put out a request through our community for a call for terms. There were some light-hearted ones. At the end of the day, I came up with the term, a previvor with a predisposition to cancer. Everyone didn’t love it. There was some high-profile criticism of the term. It was a way to provide a label to unite a community of stakeholders who really were not in a place at the table.”
Not long afterwards, Friedman was delighted to read that Time magazine chose the word as one of the 10 best new words of the year.
FORCE will hold its annual conference June 18-20 in Philadelphia. For conference details and other resources, go to: www.facingourrisk.org. Friedman and other previvors will tell more of their stories in our upcoming book, “Breast Cancer Surgery & Reconstruction: What’s Right for You. “