Monday Moms: Previvor
By Meredith Sidewater
Board Member, Komen Atlanta
“PREVIVOR”. What a strange word. For those of you unfamiliar with the term, a Previvor is a person who has a predisposition of cancer resulting from a genetic mutation but who is not yet diagnosed with cancer. I am a previvor and, whereas I once felt cursed, I now feel extraordinarily blessed.
I first learned that I could be a carrier of the BRCA1 mutation in the early 1990’s when my maternal aunt, Marcia, was diagnosed with ovarian cancer at the age of 52. She was the third generation of family members on my mom’s side who had been diagnosed with cancer in his/her early 50’s and the second with ovarian cancer (my grandfather likely died from prostate cancer though we aren’t sure). When my aunt was diagnosed, her sister, Karen, (a research scientist at the CDC) collected blood from Marcia as well as from herself, my mom and their brother. At the time, the BRACAnalysis® was not yet available for prime time; however Karen was aware of its development. She stored her blood and that of her siblings until it could be tested. As luck would have it, they all tested positive for the BRCA1 mutation.
According to the Stanford Cancer Institute web site, the BRCA1 mutation results in an average 65 percent lifetime risk for breast cancer; a 40 – 60 percent lifetime risk for second breast cancer (not reappearance of first tumor); an average 39 percent lifetime risk for ovarian cancer; and, an increased risk for other cancer types, such as prostate cancer.
As the child of a carrier of the BRCA1 mutation, my cousins and I have a 50 percent chance of having inherited the mutation. Upon learning of our parent’s carrier status, some of my cousins immediately underwent a screening for the mutation. I, however, not yet married and not yet having had children was unprepared to take drastic measures in response to a possible positive test result. And, I was not interested in learning of a positive test result only to spend the next many years worrying about what might be going on in my body. So, I decided that I would not get tested until I was done having children. That day came approximately ten years later.
I vividly remember receiving the envelope from Myriad Genetics. My Aunt Karen delivered it to me since she had submitted my blood sample on an anonymous basis. I knew that a positive test result would be life-changing…..it would mean radical surgeries to prevent the occurrence of cancer. I opened the envelope, quickly scanning the page for one of two words, positive or negative. I found the word “positive”. I briefly cried. I never really thought I would escape. It seemed inevitable to me. I felt cursed. I was 34 years old. I was not ready to mutilate my body even if for the purpose of saving my life.
I quickly assessed the risk given my family history and made a calculated decision that I could afford to wait until I was 40 to have the surgery. All of my afflicted family members were diagnosed with cancer in their 50s. For the next five years, I was able to put my impending surgery out of my mind. I had some type of medical screening each calendar quarter: mammograms, breast MRIs, breast ultrasounds, vaginal ultrasounds, CA 125 tests. The screening was time consuming and always a little nerve-wracking, but became part of my routine.
In my 39th year, I began to receive “messages” or “signals” that it was time to bite the bullet and have surgery. On at least three occasions, I picked up magazines, whether at the gym or the doctor office and happened upon articles about other women who were BRCA1 positive and who had undergone prophylactic surgeries or learned about their status after being diagnosed with cancer. I was no longer comfortable waiting until my 40th year.
The weeks leading up to my first surgery were filled with dread and horror. I was a healthy, active, busy professional and mom and the thought of voluntarily dissecting my body scared me to death. I worried about dying during surgery, not waking up, experiencing pain, looking disfigured, etc. Yet, in my mind, there was no option. Surgery was my key to survival. I had a prophylactic bilateral mastectomy in October of 2008.
I woke up feeling like I had been hit in the chest by a MACK truck. And yet, the pain wasn’t as bad as I anticipated. Over the course of the following year, I went through the process of temporary expanders, a hysterectomy and oophorectomy, and, ultimately, the swap from temporary expanders to silicone implants. By the end of that year, I was tired of doctor appointments, tired of feeling out of shape, and ready to get back to my regular life. But, I also felt thrilled to be on the other side of such a dreaded experience. I felt empowered, relieved and mentally strong.
Most importantly, I felt and continue to feel blessed. I question whether I have a right to claim kinship with those women who have undergone treatment for breast cancer, who have suffered through the fear and the sickness. Because, I am a previvor. I had the benefit of prior notice….an ability to detect my predisposition to cancer and to do something to prevent it. How lucky that I knew about my risk, that the body parts most at risk were not ones critical to survival, and that I had access to medical insurance that covered the cost of my surgeries. I don’t want to jinx myself…..I’m obviously not immune to illness, but I feel like a dodged two bullets, one aiming for my breasts and the other for my ovaries.
As a previvor and a member of the Board of Komen Atlanta, I hope that National Breast Cancer Awareness Month reminds women everywhere that they must take charge of their health. Be proactive and take advantage of access to breast screening and breast care. Choose knowledge over fear and stay strong.