Wednesday, September 29, 2010

What it means to Previve (Thoughts on National Previvors Day)

What does it mean to previve something? It doesn’t, as many people assume, mean to pre-survive. That’s linguistically impossible. To previve means to survive a predisposition. In other words, to previve is to acknowledge a likelihood and take steps to avoid it. Women who are at high risk for developing breast and ovarian cancers are called previvors, not because we’re pre-surviving cancer, but we are surviving despite a predisposition to developing it. A women who undergoes years of intense surveillance and never develops cancers is a previvor. A woman, who, like me, chooses to have preventative surgery, is a previvor. A man who carries the genetic mutation but never develops any disease is a previvor.

For some, this concept is offensive. They say we’re making a big deal out of nothing. They say that anyone can be considered a previvor of something. For instance, I’m a previvor of the hangover I’m likely to have tomorrow morning or a previvor of the sore knee I’ll have after I hit the treadmill later. But there is a key difference: I can abstain from white wine and avoid a hangover, and I can skip the gym and my knee won’t hurt. But unfortunately, there’s little I can do about my predisposition to breast and ovarian cancer. There is no magic herb, there is no amount of yoga, there is no incantation that I can recite to ensure that, despite my odds, I will be spared.

So I, like many previvors, took measures into my own hands. I had preventative surgery. Which is another controversy. For whatever reason, when it comes to preventative medicine (and prophylactic surgery), people are squeamish. Why remove healthy body parts? Why have surgery before you need to? They forget that this is common practice in other areas of medicine. Wisdom teeth? Dentists recommend they be removed before they cause problems. Suspicious mole? Don’t wait for it to turn into a problem; get it removed. Feeling a cold coming on? Drink OJ. Intellectually, I understand there is a big disconnect between molars and mammaries, but no one would suggest I wait until my mouth is infected to remove my wisdom teeth, so why should I have to wait for cancer to remove my breasts?

Being a previvor means I have a different perspective on things. Being a previvor means I have to confront possibilities and make choices. Being a previvor is hard.

All of these thoughts are occasioned by the calendar. Today is the first ever National Previvors Day. While there are a lot of strong feelings out there about the term “previvor,” in the BRCA community and beyond, I’m very glad to have a day that recognizes me and my particular circumstance. Because, and I’ve argued this from the beginning, it doesn’t so much matter to me what the label is so much as that we have one. Having a BRCA mutation, for better or worse, makes us different – we face increased surveillance, are urged to have parts of our body removed, and must deal with the emotional consequences of making choices based on tolerance for risk and fear of the unknown. We are an odd bunch, and sure, we’ve elected to give ourselves an odd name, but at least we have coherence. The most important step in any movement (and I think the move to designate a National Hereditary Breast and Ovarian Cancer awareness week as well as a National Previvor Day seems to be the first baby steps of a recognition and education drive) is unity. We are something. We are different. We are previvors. Our plight is real. Our choices are hard. But despite this, we persevere. To all my fellow mutants, happy day.


  1. As a potential mutant and previvor; I want to say 'Thank You.' You have described it perfectly and I may have to refer friends and family to your blog if my tests do come back positive. My frustration with the process right now isn't frustration with friends inquiring about the process, or frustration with my medical options. It's frustration that I can't seem to put what I'm thinking into words. You have done that for me! Thanks so much! Happy Previvor Day! xoxoxo

  2. Your reflections on being a previvor are spot-on. You provide such clarity for all of us who have bravely realized that life is too precious and short to worry about a couple of missing body parts!

  3. Very well said! I myself recently discovered that I am a "previvor" and plan on telling the family in the next week or so! Thanks for sharing your thoughts!