Why I Got My Breasts and Fallopian Tubes Removed Before My 31st Birthday
I was five years old when my mother was diagnosed with breast cancer. Thankfully, the disease didn’t take her life. But after she got sick, I knew that cancer was something I was going to have to look out for.
Growing up, though, it wasn’t something that occupied my daily thoughts. And it stayed that way until my late twenties, when I decided to get my breasts, and then my fallopian tubes, removed.
How did I get to this point?
It all started when I was 20 and my gynecologist found a lump in my breast. Knowing my health history, my doctor wanted to biopsy the lump to confirm it wasn’t cancerous. (It wasn’t, fortunately.) After we got the results, she asked me if my mom had been “tested for the gene,” and I was like: What gene? Until that point, I had never heard of BRCA1 or BRCA2, two of the gene mutations that increase the risk of breast and ovarian cancer.
Learning that I was at risk
After that appointment, I spoke with my mom. She told me she didn’t have a BRCA1 mutation, but she was unsure if she had BRCA2. (In the early 1990s, when she was tested, they didn’t know about BRCA2.) My doctor requested that she get tested, and the test came back positive. So then I got tested, and I also came back positive.
When I found out, I knew it wasn’t good news. But the doctor didn’t go into much detail about how having the mutation would increase my chances of getting breast and ovarian cancer. She just told me I should start getting mammograms before I was 30. Since I was only 20-years-old and busy studying photography and living in New York City, I didn’t really give the results much attention at the time.
Deciding to get a double mastectomy
Fast forward eight years. I was 28 and about to move from New York to Chicago. I hadn’t been to the doctor in a while, so I figured I’d get all my check-ups done before I packed up for the Midwest.
I saw a new primary care doctor who looked at my chart and said, “Okay, you have BRCA2, what have you been doing about that? When was your last mammogram?” And I was like, Never! I’ve done nothing! She told me to meet with a breast specialist immediately. This time around, I understood the urgency, so that’s exactly what I did.
After looking at my family history and talking with my mother, the breast specialist told me that I have about an 85 percent chance of developing breast cancer. She then presented me with two choices: I could have surveillance every three to six months, which would include ultrasounds, MRIs, and mammograms, or I could have a preventative double mastectomy with reconstruction.
Getting tests every few months just sounded like a lot of extra anxiety. I decided to go for the double mastectomy because it seemed like a quicker way to get on with my life. I also had the doctor remove my nipples along with my breasts because there’s a chance cancer can show up in that little bit of remaining tissue.
From the time that I made that decision to the time that I had my surgery, I felt really stressed. But when I woke up after the surgery, it felt like the burden had been lifted. All of a sudden, I knew there was a very low chance I’d ever get breast cancer.
Life after my mastectomy
My breast reconstruction and recovery took six months. I had an infection with one of my expanders-what they put in after a mastectomy before you get an implant-that put me back in the hospital post-op.
During my half-year of surgeries and healing, I ended up connecting via Instagram with one of the co-founders of a group that eventually became The Breasties, a community for women who have been affected by breast and reproductive cancers. I got really involved with them, and it’s been incredible.
We get together monthly, and it’s so nice to be around people who understand what I’ve been through, and know what being around cancer is like. Even though I’ve never had cancer, I’ve been able to be a resource to so many women and I find it really fulfilling. I’m happy to be there for people who just need to sit at my kitchen table and cry, or go out and not think about it at all.
Why I removed my fallopian tubes
As someone with BRCA2, I have a heightened risk for ovarian cancer. One of my friends from The Breasties told me that this cancer often starts in the fallopian tubes, so getting them removed was a preventive measure that could reduce my risk.
She gave me the name of a great gynecologic oncologist at Cedars-Sinai who could talk to me about it. I had already had multiple major surgeries, so when she told me the salpingectomy-the technical name for the operation-would require three small incisions, it sounded like a cakewalk. My recovery time was minimal-I laid on the couch and let other people walk my dog for the weekend, and I felt generally okay after!
My doctor explained that because I’m only 30, I shouldn’t have my ovaries removed just yet. The medical community recommends that you keep them until you’re at least 45, due to all kinds of hormonal reasons. So as long as I can hold onto them, I have to have surveillance every six months. That means going to the hospital with a full bladder so they can do an ultrasound. During this procedure, they put a wand with a camera inside my vagina to look around and take pictures.
I may have more of a chance of getting ovarian cancer, but it’s not as high as someone with BRCA1. I think that makes me feel a little better. Plus, I’m keeping in touch with my doctors, and I know what I’m supposed to be looking for. I know that I’m doing everything that I can.
My advice to other women
If you’re concerned about your cancer risk, go see a doctor. If you find out you have BRCA1 or BRCA2, it’s important to at least start surveillance, even if you’re not ready to take drastic measures right now. I know that it’s scary, but early detection helps save lives.
The decisions that we all make regarding cancer prevention or care are really personal. I was lucky enough to be in a position in my life that I could follow my urge to just get it done. I know that not everybody can do that, and not everybody feels ready.
And if you’re scared, that’s okay. It’s scary. But there are other people who’ve gone through it who you can turn to. Whether it’s just gaining more knowledge or understanding your options and then taking it from there, I think it’s wiser to do something than nothing.
Stay updated on the latest science-backed health, fitness, and nutrition news by signing up for the Prevention.com newsletter here. For added fun, follow us on Instagram.
('You Might Also Like',)
Solve the daily Crossword
