I feel lucky I was able to make this choice that they didn't get to.
To say I have a family history of breast cancer would be an understatement. My grandmother, two aunts, and a cousin on my father’s side all had the disease. Another aunt had ovarian cancer. By the fifth cancer diagnosis, we knew it wasn’t chance; cancer had to be in our genes.
So in 2006, members of my father’s family underwent genetic testing for BRCA-1, the mutation that makes you 72% more likely to get breast cancer during your lifetime, and 44% more likely to get ovarian cancer. All five of my already-diagnosed family members tested positive for BRCA-1. My father, who did not have cancer, also tested positive.
At the time, I was only a freshman in high school. I wasn’t ready to find out yet.
One year later, my aunt Helen passed away in June from ovarian cancer; followed by my Aunt Tina, who died of breast cancer in November. By 2011, my cousin Jen had lost her battle with breast cancer, too. She was 37.
It was that year that I decided to meet with a genetic counselor. I was only a sophomore in college, but I was starting to fear my fate. Would I be next?
The counselor actually told me I was still young to get the BRCA-1 test. She wanted me to be older, out of college. That way, if I decided to do something about it, I would be in a more stable place.
I ended up holding off until I was 24. My grandmother, who was first diagnosed with breast cancer in her 30s, had just died of colon cancer. Enough is enough, I thought. I was anxious, and I needed answers.
I tested positive.
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The first thing I did was see a breast specialist to make sure there weren’t any lumps in my breasts already (there weren’t). Then I had a choice to make. I could either pursue a preventive double mastectomy to erase my heightened risk of breast cancer; or I could opt to be closely monitored, and come back to the doctor every six months to ensure I remained cancer-free.
I didn’t make any decisions right away. How could I? Removing both breasts was a scary prospect. But I ultimately decided my likelihood of developing breast cancer, and my family history, were even scarier. One year and a handful of consultations later, I decided to move forward with the preventive surgery.
I underwent a double mastectomy on October 18th, 2016. The procedure took six hours, and I stayed in the hospital for three nights post-surgery.
My body had a hard time coming out of the anesthesia immediately after the procedure. Within a few hours though, my extreme nausea had passed, and by the next morning, I was even able to walk down the hospital hallway.
I received my biopsy results that second day, which showed me that there was no cancer in the breast tissue they had removed. That was the ultimate relief. It felt like confirmation that I’d made the right choice–and in time.
The most uncomfortable part of the whole process was the expanders that were put in my chest, to stretch the breast tissue and make room for the silicone implants I would get later. The expanders—which stayed in until I had my implant exchange surgery in March—weren’t painful; they were just awkward. They felt rock-hard, nothing like real breasts.
Expanders aside though, recovery didn’t last long. I was able to stop taking pain medications within a week of my double mastectomy. And though I took five weeks off from work, my friends could hardly believe I’d undergone major surgery when they visited me at home.
The truth is, taking my health into my own hands made me feel like I could endure anything. I actually felt lucky that I had the opportunity to make a choice my family members didn’t get to.
For the most part my life has returned to normal since I got my implants last spring. I’m exercising again, and I'm back to work as an exercise physiologist, performing cardiac rehabilitation at a hospital.
The physical consequences of my choice surprisingly don’t bother me much. I’m not particularly sad to not have my own breasts anymore. Part of me thinks I was never that attached to them because of what breast cancer had done to the rest of my family.
As I’ve returned to the dating world—my longtime boyfriend and I broke up about nine months after my surgery—I’ve been self-conscious that my scars might actually bother others more than they bother me. Some men haven’t understood the reasoning behind my decision, or why I did it so young. But I know that if someone truly cares about me, they’ll see beyond my scars and love me for who I am.
Luckily on the whole, people have been respectful and understanding. I’ve blogged about my journey over the last two years, and the support I’ve received has astounded me. I want to educate and inspire other women to take control of their health, and to spread awareness about the BRCA-1 mutation. My blog allows me to do that.
Most importantly, I’m proud that I chose to remove both my breasts. Knowing I’ve done everything I could to keep myself healthy isn’t just reassuring, it’s also empowering.
It’s likely I’ll also get my ovaries removed in the future, but I want to have kids first. Some of my aunts left behind husbands and young children when the disease took their lives. If I can take actions to avoid that, you better believe I will.
For now, I just feel lucky to be here.
If you feel you could benefit from meeting with a genetic counselor, the National Society of Genetic Counselors offers an online directory to help you find one in your area.