I had started to hear about the “breast cancer gene” (BRCA 1 and 2) in the news, and I thought it might finally be the reason behind the constant drumbeat of breast cancer that had echoed throughout my family for generations. My great-grandmother, grandmother, mother, and aunt have all battled breast cancer; only my mother and aunt survived it.
It was a remarkably easy test to take, even back then. I sat quietly in my gynecologist’s office as she drew a small tube of my blood—and then it was done. I just had to wait for the results. And when a nurse I’d never met before walked into the room a few weeks later to deliver the news that I was positive for the BRCA2 gene mutation, bringing my risk of developing breast cancer to 85 percent, all I could think to say to her was “I know.”
I didn’t have the benefit of a supportive genetic counselor or a high-risk support group to cushion the blow at the time. All I had was a long car ride home, plenty of time to bounce back and forth from feeling strangely close to the women in my family, to feeling a sense of overwhelming sadness that brought me to tears.
When a nurse I’d never met before walked into the room to deliver the news that I was positive for the BRCA2 gene mutation, all I could think to say to her was “I know.”
I decided that I wouldn’t tell anyone about my results for a while, not even my mom. I wanted to choose my course of action for myself, without hearing the counsel, the fears, or the experience of anyone else. I knew I’d have to live with the ramifications of my decision for the rest of my life and it was critical to me that the choice be mine and mine alone. It wasn’t long before I was certain: I would have a preventive double mastectomy in the future.
But first, I’d have to increase my screening to ensure that in the time before my surgery I was undergoing a level of surveillance commensurate with my risk. I currently undergo a yearly breast MRI, a yearly mammogram (3D), two breast ultrasounds a year, two CA 125 blood tests a year (which measure the level of the cancer antigen 125 protein in your blood and may be used to detect the early signs of ovarian cancer), and monthly manual breast exams. I also decided I wanted to establish a long-term relationship with the doctor who would eventually perform my surgery, in my case the incredible Kristi Funk, MD. (Editor's note: Dr. Funk famously treated Angelina Jolie in 2013.)
And I started reading every piece of information about BRCA, preventive mastectomies, and cancer prevention I could get my hands on. There was a lot of information about the surgery itself, but a lot less when it came to everything else that comes along with it—the emotions, the recovery, and the health and wellness components that have consequences long before or after going under the knife. Yet I kept all of this very private, only eventually sharing my diagnosis with my mother, sister, and a couple best friends. That is, until I decided to run for U.S. Congress in 2017.
I was raised by a single mother who immigrated to the U.S. from Mexico just a few years before I was born. Spending my childhood in a three-bedroom apartment with up to eight family members at a time, we had a lot of love but not a lot of resources and we sometimes relied on public assistance and Medicaid to survive. These experiences led me to pursue a career in public service, working at a private health foundation, earning my Master of Public Policy at Harvard, and eventually working in the White House as an aide to President Obama during the time the Affordable Care Act was passed. I’ve seen firsthand the heartbreak that comes with not having access to health care during a devastating medical diagnosis time and time again, so when a special election was called in my district in Los Angeles just weeks after President Trump was elected, I felt there was too much at stake for my community to not get up and fight with everything I had.
Your health should not be dictated by your zip code. Healthcare is a fundamental human right.
Shocking many of my friends, I disclosed my BRCA2 gene mutation diagnosis publicly in the Washington Post as a part of my campaign. I even talked about BRCA in my television ad. I also chose to be open and vulnerable regarding the realities of this complicated journey because none of us should feel alone, whether you have breast cancer, are BRCA positive, have a family member who has cancer, or are simply worried about your risk. And as a Latina, I especially want to increase that awareness within communities of color, given that women of color are more likely to be diagnosed with cancer in advanced stages due to a lack of access to screening and treatment options. This literally is the difference between life and death in communities that struggle with barriers to resources and quality healthcare every day, like the one that I come from. Your health should not be dictated by your zip code. Healthcare is a fundamental human right.
Sometimes you pick the issues that matter most, and sometimes they pick you. In my case, I would’ve never imagined that a routine gyno visit five years ago would lead me to becoming an outspoken advocate for women’s health; but in the end, I feel more empowered than ever thanks to having this information.
If you have a reason to believe you may be at a higher risk for developing breast cancer, take a genetic test. There are several accessible and affordable options that include free genetic counseling with each test, which is critical. (Color is one such test). Learn about ways to reduce your cancer risk and educate yourself on your treatment options by reading books such as Breasts: The Owner’s Manual by Dr. Funk. And join a support organization to help you navigate the ups and down of a diagnosis, such as FORCE.
We need not struggle alone or be victims of our circumstances. When it comes to women’s health and healing, we have the power to save our own lives.
I'd love to hear from you—please reach out, connect with me on social media, and share this story with the women (and men) you love. I’ll be sharing my own journey, holistic health tips and more on my advocacy around women’s health on Instagram.
Alejandra Campoverdi is an advocate for women's health, education, and empowerment, a First 5 California State Commissioner, former White House aide to President Obama, and Certified Holistic Cancer Specialist.
Loading More Posts...