What is a “Previvor?”

There is a lot of terminology associated with cancer, but one idea that was new to me is the concept of a “Previvor.”  Although I’d seen the word frequently over the past several months, it came to the forefront last week.  September 29 was National Previvor Day. 

What is a “Previvor?”

A previvor is someone who has a genetic predisposition to cancer but who hasn’t actually developed the disease.  Some people take the previvor concept a step further and use the term to identify people who have undergone preventative surgeries. The term was coined about 20 years ago and is meant to convey the unique needs and circumstances derived from increased cancer risk, but also different from those people with a cancer diagnosis. 

The concept comes from premise that no one should have to face hereditary cancer alone.  Many associate the term with empowerment, community, and raising awareness of hereditary cancers.

Some people with a hereditary cancer predisposition wear the label proudly.  There are t-shirts, bracelets, mugs, and other swag.  There are shirts that say “HBOC Survivor Previvor BRCA,” “Preventative Surgery Rocks,” and “I Don’t Just Survive, I Previve.”

I have mixed feeling about it.  I love the idea that a National Previvor Day raises awareness of hereditary cancers.  If people get genetic testing because someone created National Previvor Day, I’m all for it.

But on a personal level, the word makes me uncomfortable.  Obviously, the word is derived from the word survivor.  To me, a survivor earns that label.  A cancer survivor has suffered an ordeal and come through it. I, on the other hand, did nothing to earn the label other than be born with a genetic mutation.  Furthermore, I am lucky that I don’t have a cancer diagnosis.  I’ve heard that some cancer survivors may feel offended; the term sounds demeaning to them and minimizes their experience as a cancer survivor.  I completely understand that they would feel that way.

But on the other hand, my experience IS different from a survivor.  Many people over the past several months, upon reading my blog and learning my story, have said, “You should talk to so-and-so.  They had breast cancer.” I know they mean well, but I cannot identify with that journey.  They had a cancer diagnosis.  They had no choice but to act, whether with surgery, chemo, radiation, or some combination.  But I am healthy; I have a choice.  In fact, I have many choices, including the option to do nothing.  That is a huge difference.

I will not, for now, label myself as a previvor, even while others do.  I am grateful that I know about my risk, and I continue to struggle with my choices. I am appreciative of the support I’ve received from my family and friends.  For now, that knowledge is enough for me, without any labels attached.