Breast Cancer Awareness: Entrepreneur ChatWell Woman Coalition's Alejandra Campoverdi
Breast cancer has been a constant in my family for generations, yet the experience of members of my family has been completely different based on our access to health care (or lack thereof) and our sense of agency over our own health and bodies. To date, my great-grandmother, grandmother, mother, and two aunts have all had breast cancer. My grandmother didn’t have health insurance when she first felt a lump in her breast so she kept quiet, not wanting to burden my family to pay out of pocket for a mammogram. She also didn’t feel completely comfortable around American doctors, having been raised in Mexico. By the time she was diagnosed, her cancer had spread and she died soon after, devastating our family. My mother had HMO insurance when she was diagnosed and I had to fight to ensure that she receive the time and attention she deserved during her surgery and treatment. She felt like a number and at the whim of her doctors.
Years after their battles with breast cancer, I learned of the BRCA gene mutation in the news and immediately asked for a genetic test. I wanted to know definitively if hereditary cancer was behind the generational suffering in my family. When it came back possible for BRCA2, I was fortunate to have good health insurance which allowed me to choose my own doctors and specialists, and to receive personalized care. I quickly decided to have a risk-reducing double mastectomy in the near future, and felt empowered and informed throughout the process.
The BRCA2 gene mutation had just been discovered when my grandmother died. If we knew then what we know now, her screening, surgery, and treatment as a BRCA carrier would’ve been different and could’ve saved her life. If we knew my mother was a BRCA carrier when she had cancer, her screening, surgery and treatment would’ve been different as well. It’s painful to wonder “what-if” so instead, I’m focusing on raising awareness of the BRCA gene mutation and genetic testing, especially in communities of color. Today, BRCA tests are more affordable and available than ever before.
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 non-invasive breast cancer in one of my breasts, despite a recent negative mammogram and ultrasound. Yet because of my preventive action (genetic testing, risk-reducing surgery), I would not need to undergo any additional treatment. I had beaten breast cancer before I even knew I had it.
Choosing to undergo a preventive double mastectomy is a very personal decision that every woman must make for herself. For me, the fact that I could lower my breast cancer risk from 85% to under 4% in one surgery made the decision a no-brainer for me. But there is no choice that is right for everyone. The most important thing is to take a genetic test if you have reason to believe hereditary cancer may run in your family. At the very least, if you test positive you will be under a heightened screening regimen which alone can save your life, given how important early detection is when it comes to breast cancer.
Show up. Even if it’s just to sit with a loved one while they are stuck in bed for hours. There is a lot of down time and having company makes a big difference. And listen. They are being bombarded with options, statistics, and advice from well-meaning friends and family. Be the ear they need to vent some of their own worries and frustrations. Medical bills can get ridiculously expensive, even with insurance, so look for ways to ease the financial strain. Food trains and/or food delivery gift cards are hugely helpful and greatly appreciated.
I founded the Well Woman Coalition from my hospital bed about a year ago. The Well Woman Coalition is an initiative to empower women of color to have agency over their own health and healing. I wanted to cultivate a space for women of color to advance our own health and wellness priorities, to enrich our collective power, and to nurture one another in our journeys. As a Latina, it was particularly important to me to personally serve as a resource and build a sense of community, which is also why I was so public documenting my entire experience on Instagram.
Breast cancer is the most common cancer among Latinas, who also tend to be diagnosed at more advanced stages, many times 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. Relatedly, breast cancer is the leading cause of cancer death among Latinas. My grandmother 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.
We are bombarded with so many messages that can make us feel like someone else knows our bodies better than we do, whether it be a family member or a doctor or a politician. That’s not true. We know our bodies best.
We ignite conversations around women’s health, curate empowering events, and cultivate a supportive community. An example of this was our recent Latina Empowered Health Summit at Los Angeles City Hall. On October 9th, the Well Woman Coalition partnered with Los Angeles City Council President Pro Tempore Nury Martinez to host over 125 high school-aged Latinas for conversations and demonstrations about women’s health and wellness. In addition to learning from inspiring and relatable Latina leaders and experts, attendees also were guided through breath work, yoga, nutrition, and mental health breakout sessions. For most attendees, this was their first time experiencing any of these practices.
I have also 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.
We are bombarded with so many messages that can make us feel like someone else knows our bodies better than we do, whether it be a family member or a doctor or a politician. That’s not true. We know our bodies best. We are the CEOs of our bodies. This journey has been the greatest validation of the value of listening to and cultivating one’s intuition. Learning to honor that voice is one of the most important things we can do as women.
As it relates to breast cancer, women often detect their cancers themselves, up to 25% by self-examination. When we advocate for our bodies, we are not exaggerating. We are not health-obsessed. We are not paranoid. We are saving our lives.
Set a reminder and be religious about your yearly mammogram. Do a monthly self-breast exam. Take that genetic test, if you have reason to believe you may be at risk. Follow up on that irregular Pap smear. Push for the extra blood work just in case or for a referral to a specialist if you still have questions. And take care of your mind and spirit as well. This looks different for everyone but whether its yoga, breath work, meditation, a plant-based diet, or somatic therapy, find what works for you and be intentional about it.
Often times, people misunderstand and say that I “carry the BRCA gene.” Actually, everyone has BRCA genes. The issue is when your BRCA gene, which acts as a tumor suppressor, is mutated (i.e. broken). Also, not only can men be carriers of the BRCA gene mutation, but they can also pass it down to their children.
While preparing for my double mastectomy, I wanted to read every piece of research I could get my hands on. The deep connectivity between the mind, body, and spirit as it relates to cancer soon became crystal clear to me, as well as the stress-disease connection. I was taking a big step to medically make my body less compatible to cancer but I also wanted to understand everything I could to reduce my risk holistically, which includes diet and lifestyle, stress management, spirituality, psychology and more. I found a course on a holistic approach to cancer and enrolled, for the knowledge more than anything. I integrate this knowledge every day into my life and use it to inform the programming and messaging of the Well Woman Coalition. Through my experience with BRCA and preparing for surgery, I have amassed a library of tips, guidance, and lessons but they can’t live and die with me. I’m committed to ensuring that every woman feels knowledgeable and empowered over her own health and healing.