On October 6, 2000 I posted “I need a label!” on the FORCE message boards.
Little did I know at that time just how important that one post would be. I had recently discovered I was BRCA1-positive and was in the process of determining what I was going to do with that information. I remember sitting down and creating the post because I was so frustrated by continually having to repeat who I was and what I was going through. I simply wanted a succinct way of describing my experience to doctors, family and friends. Early on, FORCE’s message boards had become an invaluable resource as it gave me a place to interact with others who understood. If I was frustrated, might I not be alone?
An excerpt of my post reads:“Ok, I have to admit. I need a label. Do we have one? You know, those that have the gene [mutation] but have not had cancer. The ones going through all this research and deciding on prophylactic surgeries or not. We need more of a voice and a label…a name.”I laugh as I read my original post, often saying if I had only known it was going to be such a important piece of FORCE history I surely would have taken the time to write a more sophisticated request. I do think, however, that my random thought process, so evident in the post, helps support the level of frustration I felt at the time.Sue Friedman, FORCE’s executive director, understood the magnitude of my request. At that moment, FORCE embarked upon creating a label for our community, but also creating that much needed voice. For the past 10 years, “previvor” has been widely accepted and used among the hereditary cancer medical community and even became one of Time Magazine’s Top 10 Buzzwords for 2007. The latest claim to fame for the term, which excites me the most, is National Previvor Day. It will not only help substantiate the term among the general population, but will allow for additional educational opportunities as well. I have no doubt it will spark conversations within families who may ultimately find out that they too are at high risk. National Previvor Day can and will save lives. I could not be more thrilled to have been a part of this initiative. It often leaves me speechless.Ten years later, I’m proud to say I’m still 100% a previvor. I’m involved with FORCE on a deeper level, but just as important, I’m happy to report I live a completely normal life. I’m a designer at a commercial real estate services company, I’m a mother of two high school sons, and I just celebrated my 20th wedding anniversary.
I use the term previvor all the time. Mostly when talking about breast cancer, or BRCA or HBOC, because it is a lot shorter and much less nausea invoking than "85% chance of breast cancer and 40% chance of ovarian cancer." And a lot easier than "I used to have an incredibly high risk of breast and ovarian cancer, now my risk is the same as average after major surgeries." But it is October, and my family and partner want to honor my struggles along with the survivors. And in my life cancer, and BRCA and HBOC come up every week somewhere. I need a tee shirt. I have a button. It is not meant to be exclusionary. It is meant to be descriptive. Some day the term will be on book jackets to explain characters. In the vernacular - As impatient as a previvor looking for a mate, As anxious as a previvor waiting for test results. As proud as a previvor in October.
It may still not be that well known but it says a lot in a few words. Points to argue about could be who counts as a previvor? Those with BRCA mutations,those with HBOC, those doing surveillance, those who have had surgeries? I tend to be inclusive about it.
It is not like we are requesting special parking spots. We are requesting a day a year, along with grandparents, sweethearts and bosses, and you don't even have to buy a card. We are asking for help in saving people's lives by educating people about a condition that 1 in 400 people have that there are very specific things that can be done to avoid disease and death.
Yes, it is hard to understand, but that is what the whole education campaign is about. It is true that everyone has mutations and risks of diseases, but most people don't know what they are, and most do not have to worry about it in their 30's and 40s while establishing families and carreers. Most do not have to make hard decisions about major surgeries in their 30's and forties and most do not have so much cancer hanging over our heads.
This week I have to have a list to remember who to pray for. I think we deserve a moniker.