Facing down a probably someday cancer
What do you do with a diagnosis that you probably will get cancer someday?
It could be months, years — or never.
I agonized over that question for years after testing positive for a BRCA2 mutation in January 2009.
A BRCA2 mutation means I have a 69 percent chance of getting breast cancer by age 80, according to the latest National Cancer Institute estimates. The odds are even higher for women, like Angelina Jolie, with BRCA1 mutations.
With most medical diagnoses, you can expect a fairly clear recommendation, such as a prescription, follow-up appointment or surgery. Not so with a BRCA mutation or other genetic predisposition to breast and ovarian cancer.
My doctors said my options for managing my high breast cancer risk came down to a “personal decision.” I could get extra screenings, such as an annual MRI and clinical breast exams, to try to catch any breast cancer early. Or have a preventative double mastectomy to dramatically reduce my risk of breast cancer.
On the other hand, doctors urged me to have my ovaries removed as soon as possible because I was 41 and there are no reliable tests to catch ovarian cancer early. Symptoms of ovarian cancer can include bloating and a feeling of fullness, something many of us experience so regularly it may not set off alarm bells.
When I learned about my BRCA2 mutation, I was the same age my grandmother was when she died of breast cancer in 1963 and left three devastated children. My son was only one year old. I was terrified of anything happening to me. But I didn’t know what to do. Surveillance or surgery? I worried that surveillance offered no guarantee of catching cancer early at a treatable stage. On the other hand, surgery seemed, well, so drastic.
It’s not easy to decide to remove parts of your body, especially your breasts, when you do not have cancer and may never get it. I kept thinking, what if I go through a double mastectomy, which sounded absolutely horrible, and was never going to get cancer anyway?
So I tried what’s called chemoprevention. I took tamoxifen, a breast cancer drug, to try to prevent breast cancer. It caused menopausal symptoms and I felt miserable. I learned that I could still reduce my breast cancer risk and stop taking tamoxifen if I had my ovaries removed. I had that surgery in October 2009.
I continued with alternating mammograms and breast MRIs over the next several years, leading to a long string of nerve-wracking biopsies and false alarms. Then, in 2015, I got a close-up look at the hell of breast cancer and chemotherapy when my mom was diagnosed with a Stage 1 tumor. She got through her treatment and is doing OK, but chemotherapy took a toll.
By this point, my mom, grandmother and great-grandmother all had been diagnosed with breast cancer. My odds weren’t looking so good. I did not want to wait for cancer to come. In 2016, I had a double mastectomy. The pathology came back showing that I had the surgery just in time. I had DCIS, Ductal Carcinoma In Situ, a noninvasive form of breast cancer that in some cases can become invasive.
So what do you do with a diagnosis that you probably will get cancer someday? Do your homework. Talk to doctors. Look at your family history. Do what’s right for you. But be proactive.
It took years for me to work up the courage to have what I used to call “The Surgery” (I couldn’t say the word mastectomy). My DCIS diagnosis confirmed for me that I made the right decision. I have no regrets.
I feel very lucky that I was able to take a BRCA test and do something about my extremely high risk.
Only one in 400 or so of us (one in 40 among people with Ashkenazi Jewish heritage) carry BRCA mutations. But more and more of us will face similar types of excruciating health decisions as genetic testing becomes more common. As difficult as the choices may be, at least we have them.
Kim Horner is author of Probably Someday Cancer: Genetic Risk and Preventative Mastectomy, which includes a foreword by Sue Friedman, executive director and founder of Facing Our Risk of Cancer Empowered (FORCE). Probably Someday Cancer won the top prize in book manuscript competition at the 2017 Mayborn Literary Nonfiction Conference. The University of North Texas will publish it in early March.