I always thought there could be a possibility. My mom had breast cancer in her 30s, as did my grandmother in her 50s. I had a pretty high chance of having the BRCA gene, more commonly known as the breast cancer gene. But getting tested for a long-term genetic issue just wasn’t on the top of my to-do list.
In early 2016, after my grandmother passed away from bladder cancer, my mom decided to get herself tested. It came back positive for BRCA2. Although she’d already had breast cancer once and a clear mammogram that year, with the new diagnosis, her genetic counselor recommended a breast MRI. That MRI changed everything. Something showed up — the smallest spot — which led to a biopsy, and then, for the second time in her life, a diagnosis of early stage breast cancer.
Since it’s Breast Cancer Awareness Month, you may have been hearing a lot about BRCA gene. Angelina Jolie courageously wrote about her experience with it in The New York Times back in 2015. “Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action,” she wrote in the piece.
Jolie and my mom now have something in common — they both got the BRCA gene test, and took action with a mastectomy with reconstruction and a partial hysteroscopy. Today, you wouldn’t even know my mom had a life-altering surgery. She is back to work, traveling, and bugging me to give her grandchildren. But she’ll be the first to tell you that deciding to have the test saved her life. Had she waited another year, who knows how that could have changed her outcome.
Now, let’s fast forward to me. The BRCA gene can be hereditary, and I am a planner. After seeing everything my mom went through last year, I decided to embark on the same journey. I refuse to sugarcoat it — getting tested for the BRCA gene is not an easy process. Between making sure you have the right insurance and securing a referral to a genetic counselor, to debating between companies to administer the test and finding a doctor who will order the test, there is a lot to do. I live in a small city that gave me access to all the doctors I needed under one hospital system, and even so, I clocked in 10 visits to the hospital in just 30 days.
A few weeks after getting tested, my genetic counselor emailed to let me know that the results came back and I scheduled a call to find out the results. They hit me like a ton of bricks: I had tested positive.
I’m not an emotional person; my friends actually tease me about how much it takes to shake me. I have an extremely positive outlook on life, a great husband, an amazing family, and wonderful friends, but in that moment, I broke. I hung up my phone and just sat on my husband’s lap and cried.
I cried for the new label — “high-risk cancer patient” — that will accompany my medical file for the rest of my life, and for the 85 percent chance that I’ll get breast cancer at some point in my life. I cried for the eventuality of having to go through major surgery in my 30s and lose my breasts. I cried for my ovaries and the possibility of starting menopause earlier than anyone should have to. I cried for the medical expenses that I’ll rack up year after year to maintain the recommended screening schedule, and for having to put this burden on my current and future family.
All these worries aside, I’m still fortunate. I have a great support system in place, and receiving the diagnosis early means I have options. I can let the planner in me out and face this life obstacle head on. I’ve already been assigned to a high-risk cancer doctor, and we have a five-year plan in place. For now, I get to go on enjoying life — with a few adjustments. I see my doctor every six months for either a mammogram or breast MRI, and have a yearly visit to my OBGYN for another breast exam and Pap smear. I’ve decided against the double mastectomy until I’m done having children.
Ultimately, there’s still a lot that doctors have to learn when it comes to breast cancer and the BRCA gene, but if and when it hits me, maybe everything will be different than it is today. If you’re in my position, I can’t tell you what to do. But I will say that I’ve found some solace in having a sense of what is to come.