Finding the Luck in Unlucky News
BY MEREDITH SIDEWATER/SPECIAL FOR THE AJT//
Previvor – what a strange word.
For the uninitiated, a previvor is someone with a predisposition toward developing cancer resulting from a genetic mutation, but who is not yet diagnosed with the disease.
I’m a previvor who formerly felt cursed, but who now feels extraordinarily blessed. I feel it’s important to share my story with hopes it will inspire others to get screened and discuss their risk of cancer with a professional.
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As a previvor and a member of Komen Atlanta’s board, I hope that National Breast Cancer Awareness Month in October reminded women everywhere that they must take charge of their health.
It was during the early 1990s when my maternal aunt was diagnosed with ovarian cancer at the age of 52. My aunt was the third generation of family members diagnosed with cancer, 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 – a research scientist at the CDC – collected blood from herself and her three siblings. At the time, the BRACAnalysis® was not yet available; however she was aware of its development, and she stored their blood until it could be tested.
Unfortunately, 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 children of a carrier of the BRCA1 mutation, my cousins and I have a 50 percent chance of inheriting the mutation. Upon learning of our parents’ carrier status, some of my cousins immediately underwent a screening.
At the time – in my 20s, not yet married and not yet a mother – I 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 many years worrying about what might be going on in my body. So, I decided against testing until done having children, a time that arrived about 10 years later.
There are still vivid memories of receiving the envelope from Myriad Genetics. My aunt delivered it to me after she submitted my blood sample anonymously. We knew a positive test would be life-changing, leading to radical surgeries to prevent the occurrence of cancer.
I opened the envelope, quickly scanning the page for one of two words, positive or negative, only to find the word “positive.” I briefly cried. I was 34-years-old and not ready to dismember my body, even if to save my own life.
My aunt helped me quickly assess the risks given the family history, leading to a calculated decision that I could afford to wait until closer to 40 to undergo surgery. All of my afflicted family members were diagnosed with cancer in their 50s.
For the next five years, I was able to put the impending surgery out of my mind. However, I had some type of medical screening each calendar quarter: mammograms, breast MRIs, breast ultrasounds, vaginal ultrasounds, and CA 125 tests. The screening was time consuming and always a little nerve-wracking, but became part of my routine. Each screening provided a welcome relief – all clear (whew!).
In my 39th year, “messages” or “signals” led me to believe it was time to bite the bullet and have surgery. On at least three occasions, magazine articles appeared 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 40.
The weeks leading up to my first surgery were filled with dread and horror. As a healthy, active, busy professional and mom, the thought of voluntarily dissecting my body scared me tremendously. I worried about dying during surgery, not waking up, experiencing pain, or surviving disfigured. Yet, in my mind, there was no option. Surgery was my key to survival.
I had a prophylactic bilateral mastectomy in October of 2008, waking up feeling like by a truck hit me. And yet, the pain wasn’t as bad as 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, now feeling 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.
As a previvor, I had the benefit of prior notice: the ability to detect my predisposition to cancer and to do something to prevent it.
How lucky to be informed about my risk, that the body parts most in peril were not ones critical to survival, and that I had access medical insurance that covered the cost of my surgeries.
I don’t want to jinx myself, as I’m obviously not immune to illness, but it feels like my “previvor-ness” helped me dodge two bullets, one aiming for my breasts and the other for my ovaries.
I hope women will be proactive and take advantage of access to breast screening and breast care, with many resources available via KomenAtlanta.org.
Choose knowledge over fear and stay strong.
Meredith Sidewater is a senior vice president and general counsel for LexisNexis Risk Solutions. She is board member for Komen Atlanta, and she resides in Sandy Springs. She is also a member of Temple Sinai. Her children attend The Epstein School and the Greenfield Hebrew Academy.
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