By nature, I am a planner. Weekends, parties, vacations. Everything needs a plan. I live and breathe by my calendar. I love to pencil in even the smallest of events.
So, when I was 26 years old, you better believe I was thrown for a loop when I found out I was BRCA positive.
While it wasn’t entirely a surprise (I lost my grandmother to ovarian cancer when I was four and watched my mother battle the disease when I was a teen), it still wasn’t part of my plan.
Being BRCA positive (BRCA is an abbreviation for Breast Cancer gene) means my risk for cancer, specifically breast and ovarian cancer, is significantly higher than that of the average woman.
Data from the University of Michigan predicts about 18 out of 100 women with the BRCA2 mutation will get ovarian cancer by age 70. And according to the American Cancer Society, “on average, a woman with a BRCA1 or BRCA2 gene mutation has up to a 7 in 10 chance of getting breast cancer by age 80.”
My sister is a doctor, and after hearing about genetic testing more than seven years ago, she encouraged my mother to find out if her cancer was linked to the BRCA gene. When my mom’s results came back positive, that meant my sister and I were eligible to be tested too. So, the three of us went to my mom’s doctor and my sister and I had our blood drawn. With BRCA, you have a 50/50 chance of being positive.
My sister, thankfully, tested negative.
I, unfortunately, received the news that I, like my mother, and probably grandmother before her, had the gene that made me more susceptible to various cancers (the term for someone with a higher chance of getting the disease is called a previvor).
When I found out, I was driving home from the gym. I pulled over and bawled.
And then I called my mom.
After I cried some more, I composed myself and decided it was time to make a plan.
I immediately researched breast surgeons and sat down with my OBGYN. We all decided that we would be aggressive in screening until I was ready to move forward with preventative surgeries (both a double mastectomy and bilateral salpingo-oophorectomy – removal of my ovaries and fallopian tubes). Every six months, in addition to routine exams, I underwent ultrasounds, mammograms and MRIs.
And this year, at the age of 33, I decided I was finally ready to put my previvor plan into action.
In May 2021, I removed my ovaries and fallopian tubes (a bilateral salpingo-oophorectomy). I also started hormone replacement therapy to give my body the estrogen and progesterone it’s now missing.
A UPenn study found that women with mutations who “had both ovaries removed reduced their risk of ovarian cancer by 96% and their risk of breast cancer by 53%.”
Another study, published in the Journal of Clinical Oncology, found that a “bilateral prophylactic mastectomy reduced the risk of breast cancer by approximately 95% in women with a prior or concurrent bilateral prophylactic oophorectomy.” I will be moving forward with that procedure – a bilateral mastectomy with reconstruction – in February 2022.
It’s surreal that everything I’ve been talking about and preparing for over much of the last seven years is now coming to fruition. But, every day, I wake up and look at my family, and know that I’m doing it for them. I’m using the knowledge I’ve been given to make decisions that I hope will significantly lower my risk and keep me here for them for as long as possible.
It feels good to have a plan.