Here’s what it’s like to have a preventative double mastectomy at 28 years old

Eight years ago, actress and comedian Caitlin Brodnick decided to get screened for gluten intolerance. (It was 2010 in New York City—enough said.) But after her doctor learned about her family’s extensive history of cancer, he urged her to forget about the bread and get a genetic test instead.

Why? The MD suspected that Brodnick was carrying a BRCA gene mutation, which significantly elevates the carrier’s risk of developing certain cancers—including those of the breasts and ovaries—within her lifetime. That hunch was confirmed: Brodnick tested positive for the BRCA1 mutation, the same diagnosis that led Angelina Jolie to undergo a preventative double mastectomy in 2013. Every BRCA1 carrier’s odds are different, but Brodnick was given an 82 percent chance of getting breast cancer at some point.

It wasn’t a total surprise. Those with Ashkenazi Jewish heritage, like Brodnick, are particularly susceptible to the mutation—and, in fact, her father had previously received the same test results. (This raises an important point, according to Johnathan Lancaster, MD, PhD, chief medical officer at the hereditary cancer testing organization Myriad Genetics—the company Jolie used for her diagnosis. “It’s a great misunderstanding that all the predisposition to cancer [for women] comes from the female lineage,” he says. “This highlights that Dad, Grandad, and uncles can pass down to sons and daughters. So don’t just think about what Mom’s side of the family had. Think about Dad’s side.”)

But the discovery was no less difficult for her to process. “It really led to a lot of pain and stress and loneliness,” recalls Brodnick, who eventually underwent a preventative double mastectomy of her own and documented the experience in a Glamour magazine documentary series, Screw You Cancer, and a 2017 book, Dangerous Boobies. “Knowing family members who had cancer, I almost knew too much about [the disease] to ignore it.”

“Knowing family members who had cancer, I almost knew too much about [the disease] to ignore it.”

Though some doctors may disagree, cancer specialist Neil Mariados, MD, of Syracuse Radiation Oncology, believes that if cancer has hit your family hard, knowing your genetic status is worth the anxiety that it may cause—and it doesn’t mean you have to go straight to the OR. “Proactive measures can be put in place, such as [more intense] screenings, so cancers can be found early,” he says. “And if they’re found early, they can have improved outcomes.” He adds that treatment, too, can be tailored to be more effective for those who have cancer that’s linked to genetics.

That said, surgery is a particularly effective (if very extreme and controversial) way of stopping cancer before it starts—Brodnick now has a less-than-1-percent chance of developing breast cancer, according to her medical team. So how did she come to this decision, and does she regret it four years later?

Here, she shares what it’s really like to get a double mastectomy and breast reconstruction in the name of cancer prevention—before the age of 30.

W+G: We often think of breast cancers as being inherited from our female relatives, but your gene mutation came from your dad. Were you surprised to learn this?

Caitlin Brodnick: [The BRCA1 mutation] can be passed down from your mom’s or your dad’s side. With men, their risks of prostate cancer are slightly higher. But when you go to your doctor for the BRCA test, oftentimes the questions are focused on the mother or grandmother.

Do you think this means that women are missing out on the chance to be screened?

I’m not sure, but I’ve had some friends say they really have to fight to get tested. They’ll come to me and say, “I was turned away, my doctor said I don’t need it.” It’s so new, and when I was first diagnosed, I felt there was a huge scare on the doctors’ end that once we let people embark on this genetic testing, there’s going to be this mad panic. I think they were afraid of it being too much for people to handle, which is very [valid].

What advice would you have for someone who’s considering getting tested?

Go to a genetic counselor, because there’s really nothing like getting those test results. I did mine with a general practitioner and a surgeon I’d never met before…there was no support after I got the information.

Why did you eventually decide to have the double mastectomy?

In no way did I want to have a mastectomy in the very beginning, because it sounded very brutal. But I ended up not going to my doctors’ appointments and screenings at all, because there was so much of an emotional side to it. It took me three years, hiring a therapist, getting sober, and having an emotional breakdown, but I realized if [the mastectomy and reconstruction were] done in a good way, it might benefit me.

Did Angelina Jolie’s procedure have any impact on your choice?

I think I made my decision right around that time [when Angelina Jolie announced her preventative double mastectomy]. It was so freeing to see this massive celebrity—who uses her sexuality to her advantage—doing this wonderfully healthy, radical procedure that I wanted deep down inside.

What surprised you the most about the recovery process?

I thought the surgery would be a makeover moment and I’d never have to deal with anxiety or depression, but I didn’t realize how exhausting recovery is. It was very nerve-wracking, because I didn’t immediately feel strong in my body. I should have known, but that sensation was very new to me.

And if you do decide to have a mastectomy, it’s not a perfect science. It’s not like you go in, they give you your perfect implant, and you’re finished. I thought if I don’t like the shape of the new breasts, it’s my issue, but my doctor said to me it’s okay to have a revision surgery [and I did]. It’s [often] covered by insurance and is an alright thing to voice to your doctors.

Have you received any negative feedback since the surgery?

The only negative feedback has been from some men, and most of those people haven’t had someone close to them go through cancer treatment. But [many friends] say they’re really happy I went through this so I wouldn’t have to go through chemo or radiation.

Would you recommend other women with the BRCA1 mutation follow in your footsteps?

I don’t think the surgery is right for everyone. I have friends who are very attached to their breasts as a part of their sexuality, but I really resented mine. If you feel comfortable going to your regular doctors’ appointments and staying on top of it that way, [that might be the better path for you].

Other than your drastically reduced risk of breast cancer, what are some of the other benefits to come from the surgery?

I feel so strong and so in control of my body. It feels like a miracle, and my life has gone on this wonderful new trajectory of being able to support women.

Despite the double mastectomy, you still have an elevated risk of other cancers, namely ovarian cancer. How are you dealing with that?

I’m five months pregnant, so for now I’m just working on cooking this baby! Afterwards, I will get regular ovarian cancer screenings, which aren’t very comfortable, but they’re just a part of it. No one in my family has ever had ovarian cancer, so it doesn’t give me the pure panic that breast cancer did. I wear sunblock because there’s a slightly increased risk of melanoma. It just means I need to keep going to my doctors and being an active patient.

Originally published on October 2, 2017; updated October 8, 2018.

To stay on top of your breast health not just during Breast Cancer Awareness month, but all year long, be sure to ask your doctor these 5 questions. And here’s how one major activewear company is helping breast cancer survivors get back into fitness.