26.2 Step Mini MarathonWhat is a “previvor,” and why does knowing early change everything?
One of the most hopeful words in hereditary cancer isn’t “survivor.” It’s “previvor” — and it describes a chance a lot of families never realize they have.
If you’ve spent time around our events, you’ve probably heard our founder, Denise, describe herself as a previvor. It’s a word that catches people off guard, because it names something most of us were never taught to imagine: knowing your cancer risk before cancer ever shows up, and getting to do something about it.
The definition
A previvor is a person who carries an inherited genetic change that raises their risk for cancer, but who has not had cancer themselves. The term was popularized by the national hereditary-cancer nonprofit FORCE (Facing Our Risk of Cancer Empowered) to describe people living with a high genetic risk who are, in their words, “survivors of a predisposition to cancer.” They haven’t fought the disease. They’re fighting the odds.
A survivor asks, “What now?” A previvor gets to ask, “What if we catch it first?”
Where the risk comes from
Some cancers run in families because of an inherited change in a single gene — the best-known are BRCA1 and BRCA2, linked to breast and ovarian cancer, but there are many others, including the genes behind Lynch syndrome. According to the National Cancer Institute, inherited genetic changes are thought to play a role in a meaningful share of cancers, and a genetic test can tell you whether you carry one of these changes. Knowing can open the door to earlier and more frequent screening, prevention options, and decisions made with your doctors instead of in a crisis.
Why “early” is the whole point
Here’s the part that drives everything we do. When cancer is found early, the options are wider and the outcomes are usually better. A previvor gets the earliest possible start — sometimes years of it. That head start is exactly what a late diagnosis takes away.
That’s why we say it at every event: today is the best your family health history is ever going to be. Most of us assume a doctor will bring up genetic testing if it matters. Sometimes that happens. Often it doesn’t. Learning to ask the question yourself is one of the most powerful things a family can do.
Being a previvor isn’t simple
Knowing you carry a genetic risk is a gift and a weight at the same time. It can mean hard decisions, difficult conversations with family, and real worry about how that information might be used — which is exactly why we also advocate to protect people who get tested. No one should have to choose between knowing their risk and protecting their future.
If any of this sounds like your family, you don’t have to figure it out alone. Start with our resources, or come take 26.2 steps with us for someone you love.
A note on medical information: This article is general education, not medical advice, and is pending review by our medical advisor. For guidance about your own risk, talk with a doctor or a certified genetic counselor. Sources: FORCE (facingourrisk.org) for the term “previvor”; National Cancer Institute on the genetics of cancer.