When I turned 30, I thought my life was finally going to fall into place. I would meet all of those societal expectations — move up in my job, get married, and live a pretty “boring” life. Boring sounded nice, but boring wasn’t what I got. Instead, I got a preventative double mastectomy the next year.
My sister gifted me a 23andMe DNA kit for my 30th birthday, and I added on the genetic health risks test because the mild hypochondriac in me was curious. This was 2017 and I was interested in seeing if I carried a variant for celiac disease or early onset Alzheimer’s, mostly for the sake of curiosity. When my DNA test came back, my results said I was 75% Ashkenazi Jewish (which I already knew) and negative for any health concerns. Whew.
That ‘whew’ quickly dissipated six months later when I got an email from 23andMe saying that they were now FDA approved to tell you if you have one of the three hereditary cancer BRCA mutations and I would be receiving my results soon. Turns out, 1 in 40 Ashkenazi Jews carry this mutation. And within a few weeks, I received the ugly and devastating news — I was BRCA 2 positive.
Many people might not really know what it means to have the BRCA mutation, aka the breast cancer gene. Before I was diagnosed, I barely knew anything about it myself. Essentially, everyone has the BRCA gene, but these genes are tumor suppressors that help fight against cancer. Mine has a mutation, making it unable to do its job, and leaving my risk of developing breast cancer up to 80% in my lifetime. It also increases my risk of ovarian cancer up to 27%.
I felt depressed, scared, shocked and incredibly anxious. I felt like I had two ticking time bombs on my chest waiting to go off. Being in the BRCA club is a strange experience. You don’t have cancer yet, so you feel incredibly grateful, but at the same time, you feel like you’ve been given a death sentence.
How was this happening to me, I thought. There’s no breast cancer in my family, not even a scare. (I looked back over three generations of female relatives both distant and near.) But the thing is, I inherited this gene mutation from my father. If I had not gotten this DNA kit from my sister as a gift, I never would have chosen to get tested for this BRCA gene. I initially panicked, but then I decided to take it one step at a time, and one body part at a time.
From my perspective, knowledge is power. Even if that knowledge is frightening and gut-wrenching. Learning about my risk ultimately led me to understand my options for decreasing my likelihood for developing breast cancer. I couldn’t un-know it, so I decided to act.
The first thing I did after receiving my results from 23andMe was make an appointment with a genetic counselor. Not only did she confirm my results with a blood test, but she also put everything into perspective.
The first thing I did after receiving my results from 23andMe was make an appointment with a genetic counselor. Not only did she confirm my results with a blood test, but she also put everything into perspective. She informed me of my current risks at my age and about my treatment options. These gave me anxiety. I could choose surveillance, which would mean watchful waiting under the care of a breast specialist, and a mammogram or breast MRI every six months, for the rest of my life in the hopes that any possible cancer could be caught early. My other option, which sounded completely terrifying, was to undergo a preventative double mastectomy.
This decision wasn’t easy. For me, I knew right away that with my personality (overly-anxious and likes to Google and WebMD everything). I wanted to decrease my chances of developing breast cancer as much as possible, as soon as possible. I felt that this was the time in my life where I was able to handle a mastectomy emotionally and physically. I wanted to put the dark cloud of BRCA behind me and move forward with my life. Six months after an at-home DNA test emailed me about my test results, I had both of my breasts removed.
I needed my family and friends to lean on and help me grieve before this surgery. Heck, my friends even threw me a boob-voyage party. Even though I had a lot of support, I knew I needed to do my part to get surgery ready. I worked out, made healthy food choices and started meditating to prep for the big day.
I chose to have immediate reconstruction after my mastectomy, with a procedure that’s referred to as the direct-to-implant method. On my surgery day, my anxiety was through the roof, but I tried my best to find my happy place. Easier said than done when you’re about to enter a four-hour surgery. My parents and my sister came along to support me, but honestly, the moment you walk into that operating room, you feel all alone.
This approach certainly isn’t for everyone. It comes with a lot of possible risks, complications and a huge emotional toll. Two weeks post-mastectomy, however, I have absolutely no regrets But it’s important for each person to figure out what they want to do with their own body, get all the facts, weigh the pros and cons, and make their own informed decision.
There aren’t many people who you can turn to who truly understand your exact experience. So for me, I turned to Facebook groups filled with other BRCA women and previvors (someone who has survived a predisposition to cancer but never had the disease). I scoured other social media accounts for women who posted about their BRCA diagnosis and documented their double mastectomy journeys. And I found FORCE (Facing Our Risk of Cancer Empowered), an amazing resource with helpful BRCA information.
Having a huge support system is what got me through this “terrible, horrible, no good, very bad” situation. Am I being dramatic? Yes. Was the whole situation dramatic? Yes. There was a lot of therapy involved and the realization that it’s okay to feel my emotions, even if they’re painful. But after every cry, there was always a good laugh around the corner.
I’m 14 days out and I’m still on the road to recovery. It’s looking like four more weeks of sleeping in my rented hospital bed and wearing button-up tops (not really my style but I’m working it). Each day is different. Some moments I feel immense gratitude and relief, and other times I feel frustrated that I can’t open the refrigerator door yet.
What truly gets me through this is being able to share my story and spread awareness. If I can make one woman feel a little less alone and feel welcomed into this BRCA sisterhood, or help someone else through their journey, it makes all that I’ve been through worth it.