What Are Breast Cancer Previvors?

After testing positive for the hereditary BRCA2 breast cancer gene, Marion, one of my readers, recently made the brave decision to voluntarily remove both of her healthy breasts in an attempt to prevent breast cancer. When she subsequently contacted the American Cancer Society (ACS) about mastectomy/breast cancer support groups, they told her that since she wasn’t a breast cancer survivor, she wasn’t eligible to attend their groups. Needless to say, she was disappointed and outraged. As she put it, it’s almost “like the ACS thinks I had my breasts removed as a fashion statement!” While I wish the ACS had been more helpful and compassionate, I can suggest a great website, FacingOurRiskOfCancerEmpowered (FORCE), which which refers to women like Marion as previvors.

Previvors are survivors of a predisposition to cancer. Previvors have their own needs and concerns separate from those who’ve already been diagnosed with breast cancer. In fact, September 29 is Previvor Day and recognizes the unique challenges faced by those at high risk for cancer. Before any of you become overly concerned, over 90% of cancers are not caused by inherited genes, and not everyone who carries inherited cancer genes will get cancer. However, if you discover you carry one of the BRCA breast cancer genes, how far would you go to prevent the disease itself?

Since some inherited genes are also related to ovarian cancer, in addition to having a prophylactic double mastectomy, would you voluntarily elect to have an oophorectomy (removal of the ovaries) or a complete hysterectomy? Not surprisingly, many previvors are young women of child bearing age who face tremendously difficult reproductive decisions. It’s important to remember that none of these “risk-management” procedures eliminate all cancer risks, plus it’s of paramount importance you consult with an expert in hereditary cancers and risk assessment.

I didn’t discover I carried the BRCA2 gene until four years after my diagnosis, original mastectomy and six rounds of chemo. I also went against my oncologist’s recommendation that I not be tested for the BRCA genes because there was no history of breast or ovarian cancer in my family, plus he discouraged me because the test was expensive. Since my “little voice” has never let me down, I followed my instincts and was tested. When I learned I was BRCA2 positive, I didn’t spend much time wondering why I had the gene or which side of the family it came from. Instead, because there was an 87% chance I’d get breast cancer in my “good” breast, I had a prophylactic mastectomy two weeks later. Because one breast was reconstructed with a DIEP Flap procedure and the other has a silicone gel, my breasts are a bit mismatched, but I’ve never looked back or second guessed my decision.

If you or a loved one has been found to have a hereditary breast or ovarian cancer gene, or you’re a health care provider who treats high-risk patients, you might consider attending FORCE’s 2012 Conference this October 18-20, 2012 in Orlando, Florida. The conference features general sessions and workshops conducted by leading BRCA and hereditary cancer researchers, and it gives previvors the opportunity to meet and share their experiences with other previvors.

Yes, Marion, “you are accepted here,” because there are many ways we are survivors. I hope this has been of help to you.