There are three constants for the women in my family: olive skin, nostalgia for my abuelita’s (grandmother’s) tamales, and breast cancer. In fact, I have never known a time in my life when breast cancer was not present.
My family immigrated to the United States from Mexico just a few years before I was born. When I was a baby, my great-grandmother died of breast cancer. When I was a teenager, my beloved abuelita died of breast cancer. My mother was diagnosed when I was in my early 20s. And now in my 30s, I have witnessed two of my aunts battle the disease.
With this family tree, it’s no wonder my attention was piqued six years ago when I first heard of BRCA gene mutations and hereditary cancer in the news. I never imagined I would have the opportunity to know definitively what had been plaguing the women in my family for generations and I jumped at the opportunity to undergo genetic testing. When my results came back positive for the BRCA2 mutation, it was a confirmation of what I already knew in my gut: Cancer runs in my familia.
Armed with the information that I had an 85% risk of developing breast cancer due to my broken “cancer-fighting gene,” I decided I would undergo a risk-reducing surgery. I started extensive research into doctors, surgical approaches, diet and lifestyle changes, and in the process, even became certified as a holistic cancer specialist. I felt empowered, informed, and supported. Yet as my surgery date approached, all I could think of was my abuelita and how different her experience had been compared to my own.
When my abuelita first felt a lump in one of her breasts, she didn’t mention it to anyone because she didn’t have health insurance at the time. She didn’t want to burden our family to pay out of pocket for a mammogram and, frankly, she didn’t feel completely comfortable around American doctors. So my abuelita worried in silence and watched the lump steadily grow in her chest until there was no denying its presence. By the time she was finally diagnosed, the cancer had already spread throughout her body and she died soon after, devastating our family.
Breast cancer is the most common cancer among Latinas, who also tend to be diagnosed at more advanced stages, in many cases due to lower mammography rates and lack of access to health care. In addition, Latinas have the second-highest prevalence of BRCA1/2 mutations after Ashkenazi Jews. On a related note, breast cancer is the leading cause of cancer death among Latinas. My abuelita fit all of these categories, and in her memory, I am committed to fighting with everything I have to raise awareness in communities of color of BRCA and breast cancer.
This is why I have joined in partnership with Penn Medicine’s Basser Center for BRCA to launch LATINX & BRCA, a campaign to raise awareness, provide education and resources, and build support for the U.S. Latinx community. While preparing for my surgery last year and visiting local women’s health clinics, I was pressed to find Spanish-language educational materials about BRCA anywhere, despite how little knowledge there is of preventive genomics in our community. LATINX & BRCA is changing this, having already created educational materials, videos, and awareness posters to be distributed across the country. And with additional tools and resources in the works, we are just getting started. I am proud to stand with the Basser Center to move the needle on this issue for all communities, and in particular for women of color who many times find themselves missing from messaging around women’s cancers.
My own BRCA journey is a testament to just how critical this information can be. In October 2018, I underwent a preventive double mastectomy to reduce my breast cancer risk, but ultimately, the surgery was not preventive after all. Routine testing of my removed breast tissue revealed that I unknowingly already had Stage 0 noninvasive breast cancer in one of my breasts, despite a recent negative mammogram and ultrasound. Yet because I was proactive in undergoing genetic testing and a risk-reducing surgery, I would not need to undergo any additional treatment. I had beaten breast cancer before I even knew I had it.
My story should not be unique. When my abuelita died, the BRCA2 gene had just been discovered. She never received a potentially life-saving heads up that a high risk for cancer was in her DNA, but this no longer needs to be the case. Today, BRCA tests are more affordable and available than ever before. If you have reason to believe that you may be at high risk, consider seeing a genetic counselor and taking a genetic test. When it comes to BRCA, knowledge always equals power.
Alejandra Campoverdi is a women’s health advocate, founder of the Well Woman Coalition, and cofounder of LATINX & BRCA in partnership with Penn Medicine’s Basser Center for BRCA. www.basser.org/latinxbrca