This is part of a blog series from genetic counselors at the Basser Center. This was written by Becca Mueller, MS, LCGC.
What’s in a name? When it comes to “previvor,” what’s in a name is identity, community, and advocacy.
Previvors are survivors of a predisposition to cancer who haven’t had the disease. The term is meant to convey how individuals with a predisposition to cancer have their “own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.”
The term was coined twenty years ago by Sue Friedman, founder of the patent support and advocacy group, Facing Our Risk of Cancer Empowered (FORCE). Seven years later, Time Magazine named it one of the top ten buzz words of 2007. And the buzz continues, as a quick glance at the Instagram #previvor shows.
In medicine, we instead say “unaffected BRCA carrier” to communicate that someone carries a mutation but is not affected with a personal diagnosis of cancer. In contrast, the term “previvor” captures how individuals are in fact deeply affected by hereditary cancer predisposition. So much so, that for some, it becomes a big part of their identity.
“Previvor” conveys this shared sense of identity and helps to forge community. Indeed, Sue Friedman founded FORCE on the premise that no one should have to face hereditary cancer alone. For many, being a previvor is about empowerment, community, and raising awareness.
As a genetic counselor, I only use the word previvor when my patients do. I find that BRCA impacts identity in different ways and varies a lot from one person to the next and over a lifetime. When someone identifies as a previvor, I follow their lead enthusiastically.
Whether or not one identifies as a previvor, the term has been helpful for raising awareness. National Previvor Day is the Wednesday of Hereditary Breast and Ovarian Cancer week, that final week in September which joins ovarian and breast cancer awareness months. Previvorship helps fuel patient advocacy, naming the experience of hereditary cancer risk in a single word.
However, not all individuals with hereditary cancer risk identify as previvors. After all, identity is complex and fluid and people have different reasons for adopting or rejecting the term previvor. While it is hard to say how many individuals identify as previvors, researchers at Northwestern University did a small interview study to gather information on how women navigate identity and hereditary cancer risk. Among the women they spoke with, about half of them identified as previvors and half did not. Furthermore, women had different ideas about what it meant to be a previvor.
Although FORCE and most news outlets define previvors as survivors of hereditary cancer risk who have not developed cancer, some define the term much more narrowly to denote completion of prophylactic mastectomy and oophorectomy. Regardless of which definition resonates, previvorship often speaks to a before and after. A life path diverted by hereditary risk or a body altered by prophylactic surgeries.
In the Northwestern study, women who identified as previvors often felt it legitimated their experience. Previvor identity also gave some women a crucial sense of community membership and empowerment. For some, calling themselves previvors was a way to proudly claim their decisions to learn and proactively manage cancer risk. The ubiquity of previvor t-shirts and jewelry reminds us that many people are proud to be previvors, donning teal and pink to alert the world to their experience.
While some sport previvor gear with pride, others reject the term previvor. Some worry the term will make others view them differently, something they hope to avoid. In the Northwestern study, some disliked the word because they felt it jinxed them and framed cancer as an inevitable part of their futures. For some, hereditary cancer risk may be something they need to compartmentalize.
I seldom use the word previvor in genetic counseling, but as a researcher who studies the social experience of illness, risk, and disease communities, I find previvorship interesting and inspiring. In the 1990s anthropologists studying the social implications of the Human Genome Project imagined that people would increasingly connect and socialize around genetic diagnoses. Anthropologists called this biosociality and it seems to me that previvors are absolute pioneers of the biosocial. I am grateful to be able to refer patients to an established community of previvors. I also love how “previvor” takes the unique and nuanced experience of living with hereditary cancer risk and collapses it into a single, catchy name that has entered our collective vocabulary.
So, when it comes to previvors, what’s in a name? Two decades of concerted advocacy, robust community, and transformed identities.
Badal, H. J., Ross, A. A., Scherr, C. L., Dean, M., & Clements, M. (2018). Previving: How unaffected women with a BRCA1/2 mutation define and construct identity. Paper competitively selected by the Health Communication Division). Oral presentation at the International Communication Association, Prague, Czech Republic (May, 24–28).