I was at high risk for breast cancer. Here’s what I decided to do about it

It wasn’t until I became a mom that I realized how emotionally connected I was to my boobs. That they were more than just a body part. I always imagined breastfeeding my babies; with the caveats of: if I was able to, if I enjoyed it, and if it worked for my lifestyle and mental health. Wanting to breastfeed is the main reason I chose not to get genetic testing back in May 2013 when I learned the BRCA 1 mutation ran in my family.

At the time, I was 26, newly married and just beginning to think about starting a family. The general public, my family included, didn’t know much about the BRCA mutations. In fact, we found out the mutation runs in our family on a fluke when my maternal grandmother had a second bout of breast cancer. When she found out she was positive for the mutation, my mother, sister and aunt all got tested. All tested positive.

However, because we had no family history of early-onset premenopausal breast cancer—and because I wanted so badly to breastfeed if the opportunity arose, I did not get tested. It was an educated decision I made after working closely with doctors and genetic counselors. At the time, there was nothing I was going to do with the information, except freak out and spend my early 20s and 30s paralyzed with fear about cancer setting in.

Fast-forward a decade, and everything changed. In October 2023, my 32-year-old sister was diagnosed with breast cancer. Overnight, my family history dramatically changed. And it was time for me to make a decision.

A decade of uncertainty

I spent a decade assuming I was positive for the BRCA 1 mutation. Every six months, for over 10 years, when my mom or sister would get their bi-annual mammograms, MRIs or transvaginal ultrasounds for surveillance, the thought crossed my mind that maybe I should get tested. Maybe I should find out for sure if I also have the gene mutation.

But I was too scared. Yes, I assumed I was positive; but without knowing for sure, I was able to push it to the back of my mind. I was able to hold onto that sliver of hope that I was negative for the gene mutation. I want to note that even though I didn’t get tested, I did have baseline mammograms and MRIs in my early 30s. I wasn’t ignoring the facts. I was just pushing off the inevitable; having to make a decision about voluntarily undergoing a massive surgery.

A decision I had to make

Truthfully, I always thought I’d get a prophylactic bilateral mastectomy if my results came back positive, But, if possible, I wanted to wait until I finished having kids and breastfeeding. So when my sister was diagnosed in October and I was simultaneously wrapping up my third breastfeeding journey (I have three daughters and was blessed to breastfeed all three of them), I finally faced the genetic test I pushed off for all those years.

In December 2023, the test confirmed my suspicions. I am positive for the BRCA 1 genetic mutation. Once I got the results, I wasted no time. I got an MRI to make sure I didn’t already have breast cancer (blessedly, it came back clear). I found a breast surgeon, met her for the first time on March 6, 2023, and during that initial appointment, booked my prophylactic bilateral mastectomy. On March 19, 2023, I got that prophylactic bilateral mastectomy and reconstruction.

A visible and invisible scar

I wanted to go through as few surgeries as possible; after all, I am a mom of three girls, who at the time of my surgery, were 9, 8 and 16 months. I worried about the time necessary  to undergo multiple procedures. I opted to go direct-to-implant, meaning I had one 6.5 hour surgery where the doctors did the mastectomy and reconstruction at the same time (not everyone is eligible for this, but it is an option for some. If you are going through this journey too, keep in mind that you can ask your doctors about direct-to-implant.).

But in order to have one procedure, I had to get rid of my nipples. They were stretched out from my years of breastfeeding and wouldn’t look aesthetically correct with the reconstruction. I was OK with this, so I mentally prepared for the physical scars. The visible ones, like the faint pink, horizontal lines that now run across my chest where my nipples used to be. Or the dimples under my armpits, where breast tissue used to live.

What I was less prepared for were the invisible scars. It took me 10 years to get the courage to test myself for the genetic mutation—and less than 8 weeks to get surgery after finding out I was positive. If I hadn’t jumped then and there, I would have chickened out. Because looking back, getting your boobs amputated from your body is more drastic than I allowed myself to believe. If I had thought about it like this, I’d never have taken the leap. And I had to take the leap to reduce my 87% chance of getting breast cancer. For myself and for my daughters.

It’s weird. The part I’ve struggled with the most since undergoing this surgery isn’t that my body is different. It’s the fact I’ll never breastfeed again. I was not expecting to feel such a loss around my boobs and breastfeeding, considering my husband and I agreed our family was complete with three daughters months prior to the discovery I was BRCA 1+. Yet still, I find myself missing that time of my life. Missing the physical reminder of that time in my life. I have the memories. I have pictures of my daughters latched to my body, being fed. But when I take my shirt off to shower, I no longer see those boobs that nourished my babies for all those years.

I’m also really sad. Sad that this felt like my only option to prevent breast cancer. Sad that I had to undergo a serious surgery that left me in a chronic state of mild discomfort to prevent cancer (you know that feeling of relief you get when you take your bra off at the end of the day? That feeling doesn’t exist for me). Sad that so many of us have to go through this journey, whether as a part of breast cancer treatment—or as a way to prevent it.

But  I’m still hopeful. Hopeful that when my daughters are old enough to get tested, there will be other, less damaging, more effective options.

A newfound mission

That hope led me to the Cancer Vaccine Coalition, a new nonprofit with a singular focus: to raise money to fund and fill cancer vaccine clinical trials, starting with breast cancer vaccines. Before January of 2023, I had never heard of breast cancer vaccines. No doctor or genetic counselor ever mentioned these were in development.

So, when I saw a story about breast cancer vaccines on the Today Show, on January 30, 2024, (five days after I breastfed for the last time and four days after my MRI to make sure I didn’t have breast cancer), I froze. Literally stopped in my tracks and rewatched the story… multiple times, to make sure my ears weren’t deceiving me.

I couldn’t believe what I was hearing. There were clinical trials out there for breast cancer vaccines. Even more so, there were clinical trials out there for patients positive for the BRCA mutation. For someone like me.

Had I known about this option, I may have made a different choice. I may have gotten tested sooner. And honestly, now that I know I’m BRCA 1+, part of me regrets not finding out before I had children. Because there is a 50% chance I passed this on to my daughters. But hindsight is always 20/20, and with the information I knew 10 years ago, I made the best choice for me. Now, women can undergo IVF treatments to remove the BRCA 1 mutation, but over a decade ago, when I was starting a family, that wasn’t an option I had.

Because I was so shocked upon learning about the possibility of breast cancer vaccines, I immediately emailed the correspondent, Kristen Dahlgren, who was leaving NBC to go all in on raising money and awareness around breast cancer vaccines through her nonprofit Cancer Vaccine Coalition, asking for more information.

A way to move science forward, faster

Since my initial meeting with Kristen, I’ve thrown myself into this nonprofit, because none of us have time to wait. Over the past 10 years, the treatments for breast cancer and recommendations for how to prevent breast cancer if you’re at high risk have hardly changed.

That we have great treatments out there (newsflash: chemotherapy, radiation and surgery get the job done, but they are by no means great). And that it’s OK that 1 in 8 women will get the disease.

It is NOT OK. There is not a day that goes by that I don’t think about my chest. I’m constantly caught rubbing my new boobs, not to draw attention to them but because I feel them on my body. It feels foreign. I can’t lay on my stomach. And when my now 21-month-old baby girl leans on my chest, I jolt in discomfort. I’m constantly repositioning her, and my older two daughters, when we are cuddling, hugging or rocking to sleep. That’s because if I’m touched wrong or hugged too hard, it’s uncomfortable. My chest is numb but also has weird tingling sensations in some parts. I’ll admit, my new boobs look great. But they do not feel normal.

My overall risk for breast cancer is dramatically reduced. But I wish there was another way, aside from removing the body part that nourished my daughters for so many years, to reduce that risk. And by funding and participating in breast cancer vaccine clinical trials, I believe that day is coming.

I had two options: Sit around and wait until I got breast cancer or undergo a prophylactic bilateral mastectomy. Because for me it wasn’t if I was going to get cancer, but when I was going to get it.

I spent a decade worrying about breast cancer. And even with the surgery, I’m still worried. Worried I’ll be on the wrong side of the statistics and get breast cancer even with a prophylactic bilateral mastectomy. Or get ovarian cancer, which I’m also at high risk for, due to the BRCA 1 genetic mutation.

I just hope that when my daughters get older, they won’t have to have these same worries. And that in 10 years from now chemo, radiation and surgery aren’t our only options. That together, we are able to move science forward, faster.

A few actionable ways to take control of your health

While I’m not a doctor, these days, I feel pretty well versed in the breast cancer space. What I’ve come to learn is that it’s imperative to be your own advocate. And make decisions that make sense to you based on facts, family history, risk factors and doctor or genetic counselor recommendations.

It’s essential to ask questions, do your research and understand that doctors and genetic counselors’ have your best interests at heart; but no one cares more about you than you.

I’ve learned so much more since I started volunteering with the Cancer Vaccine Coalition. Below is a brief checklist of things I wish I knew sooner in order to take control of my health, what to look out for when it came to breast cancer and how to start the process of genetic testing.

• Get in touch with a genetic counselor: Most hospital systems have a department for genetic counseling and you can make an appointment. You can also ask your primary care physician or gynecologist/OB for referrals. If you have a family history of BRCA mutations, it’s smart to get in touch with a genetic counselor. They are the ones who have to facilitate getting you the test. The test is a simple spit test, and for me, the genetic counselor sent it directly to my home.

• Do self-exams: Growing up, I remember my mom had a waterproof sign that hung from the shower head giving a step by step on how to do at-home, self breast exams. I recommend doing these exams regularly so you know if something abnormal pops up. Things to look out for include lumps, a thickened area of skin that feels different, a nipple that looks flattened or turns inward, changes in the color, size or shape and changes to the skin, dents, dimples, peeling or discharge.

• Know your risk: There are assessment tools out there such as this one, being launched by actress Olivia Munn’s doctor, Dr. Thaïs Aliabadi, to give you data on whether you are considered high risk. Anyone over the age of 18 can ask for the risk assessment. Knowing your Breast Cancer Risk Assessment score and your overall lifetime risk of getting breast cancer is a way to better advocate for yourself. That being said, many women who have no family history of breast cancer will be diagnosed with the disease. Just because you are deemed low risk doesn’t mean you are out of the woods. You still need to do self exams, get regular screenings and stay vigilant around any changes you notice.

• Know your breasts: Many women have dense breasts, which makes it hard for a mammogram to pick up breast cancer. Doctors are now required to let you know if you have dense breasts, and if you do, a best next step is to ask for an MRI or ultrasound as part of the screening process (though check with your insurance company on coverage).

• Get regular screenings: My sister started getting regular screenings in her early 20s because she is BRCA 1+. I had a mammogram and two MRIs with contrast before my 35th birthday. For those of us who are high risk, we need to get screened regularly. For those who are considered “normal” risk, you are going to want to start getting screened at age 40. However, you can always ask your doctors for earlier screenings if you are concerned. You have to advocate for yourself and push for what you feel you need.

Ask about clinical trials: Breast cancer vaccine clinical trials exist for individuals who are at high risk for breast cancer because of a genetic mutation and for those who have been diagnosed with breast cancer. I knew nothing about clinical trials prior to my involvement with the Cancer Vaccine Coalition. Know your options. Ask the questions. And don’t be scared to advocate for yourself.