Why I got a prophylactic double mastectomy
Written April 3, 2022
Learning I Had The BRCA Gene Mutation
In 2018, I found out that Maya Amoils, who had been one of my closest SF/work friends when I worked at Google and lived in San Francisco after college, was diagnosed with stage 4 ovarian cancer at the age of 28. I didn’t know anything about it, but when I started googling ovarian cancer to learn more, I learned that there is a genetic mutation you can have known as “BRCA”, which results in a significantly higher likelihood of getting breast cancer, melanoma, or ovarian cancer in women (and prostate cancer in men). To put it in perspective: 13% of all U.S. women get breast cancer, while 45–87% of women with a BRCA mutation get it. Meanwhile, 1% of all women get ovarian cancer while 10-70% of women with a BRCA mutation get it.
I immediately bought a 23&me test, which came back weeks later with only one scary result: I had the mutation. I knew not everything in 23&me is always correct (for example, they claimed that my genetics show I have an equal preference to vanilla and chocolate, when I would never think twice about choosing anything other than chocolate), but nonetheless, I broke down immediately upon receiving this result. I was terrified. My mom suggested that I get tested at Memorial Sloan Kettering (the #1 cancer hospital in the world, aka “MSK”), so I did, and my BRCA genetic mutation was confirmed.
MSK was great – they helped me with all the next steps, one of which was to figure out which side of my family this came from (so I could warn them). After mapping out who in each family had the various relevant cancers, 2 things became clear: one, that it was from my dad’s side (despite that my mom’s side also had a history of breast cancer), and two, that the number of people who had cancer in my family placed me on the higher end of the spectrum for likelihood that I myself would get at least one of these cancers.
Before I keep going, I just want to say to everyone reading this: PLEASE consider getting tested for the BRCA gene. Just knowing that you have it can help you be so much more proactive about your own health! And while I wish I didn’t have the gene, I’m so grateful I now know and can be proactive about my life and health, and even stop the gene from continuing on in my family.
Preventative Screening
I decided I didn’t want to take action at all – I knew many women with the BRCA gene get surgeries done preventatively (known in the medical world as “prophylactically”), but I decided to start with just screening myself, since I was young (28 at the time).
The lovely position every woman gets to go through at their OBGYN (or in this case, at my biannual ovarian cancer screening)
MSK had me join their RISE program, which meant I would be screened for breast cancer via MRI’s, Mammograms, or Doctor checkups every 6 months.
For my ovaries, I found a doctor through Mount Sinai who specialized in helping women who had a high likelihood of ovarian cancer (Dr. Zelligs, who I LOVE). I also decided with my husband (Matt) to do embryo freezing, so we could actually ensure my gene would not be passed down to our children.
And finally, to be proactive against melanoma (which certainly is popular among my pale Jewish family), I found a fantastic dermatologist (Dr. Ginsberg) who also was used to handling patients who were high risk.
And so, in 2019, my screening phase began.
2021: Having a Scare
A picture of me awaiting the MRI biopsy
It was about 2 years of screening that went by when MSK called me to tell me they found something during my MRI. I don’t exactly remember what words the doctor used, but all I knew was, it was one of the worst phone calls of my life. My heart sank, and I couldn’t stop crying. I was certain I had breast cancer. They got me in 3 days later for an MRI Breast Biopsy (which was not fun – you’re literally in an MRI, face down, getting poked and pulled). And a few days later, I found out it was benign and nothing to worry about. Nonetheless, I never wanted to go through that week again – it was one of the most depressing, high stress, terrifying weeks of my life.
Deciding to Just Do It
I met with my MSK doctor (who specializes in breast cancer prevention) soon after the scare happened. I explained that I want to have kids as soon as possible. When she reminded me my chances of getting breast cancer were in the high 80%’s, and that if I were to get it, there was a high likelihood it would happen in my 30s, I needed to make a decision: I know I want to get the mastectomy before I get breast cancer, so do I wait to get the surgery until after I have kids, or just bite the bullet now? Here’s how my thinking went:
Reasons to get it done now:
I won’t have to risk being pregnant and having breast cancer during the pregnancy, which is terrifying. (The years I want to have children are the years I’d be at some of the highest risk of having breast cancer.)
I won’t have to go through the surgery, which I understood to be extremely difficult and intense, while I had one or two kids running around depending on me to be their mom. (NOTE: a lot of women do get mastectomies while also being moms, and are completely fine. And those women are absolute rock stars. I just simply decided I didn’t want to have to go through that myself.)
I can be done worrying about breast cancer, which – after the scare of the prior summer – would be a huge amount of anxiety gone.
Reasons to wait:
Science gets better every day. What if they find a cure for breast cancer in the next few years?
Breastfeeding would be great. I know you can buy breast milk from a milk bank, but I always wanted to breastfeed.
The surgery seems terrifying.
Would this all be for nothing? There is a chance I’d never develop breast cancer.
After going through those reasons with my doctor at MSK – keep in mind, a doctor whose goal is to preventatively screen against breast cancer, NOT convince you to get the mastectomy – she said “based on your reasons, I think you should get it done.” And so, I made the appointment with the surgeon.
Quick note: even BRCA women who get a prophylactic mastectomy still have a small chance of getting breast cancer, but the chances drop down to <5% (some say as low as 1%).
