Host of the Pod is a Woman podcast, founder of the Well Women Coalition, and producer of the recent PBS documentary Inheritance, in which she also appeared, Alejandra Campoverdi devotes much of her time to breast cancer patient advocacy and awareness, especially for women of color. And in an exclusive interview with Mediaplanet, she explains why.
When were you diagnosed and at what age?
What stage were you diagnosed with?
Stage 0 DCIS (I previously knew I was BRCA positive)
Is there a family history of breast cancer?
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 grandmother died of breast cancer. My mother was diagnosed when I was in my early 20s. And in my 30s, I witnessed two of my aunts battle the disease. With this family history, I leapt at the chance to take a BRCA genetic test in 2013 when I first heard of it on the news. When my results came back positive for a BRCA2 mutation, I wasn’t all that surprised. Armed with the knowledge that I had an 85 percent risk of developing breast cancer, I decided to undergo a risk-reducing surgery. In 2018, I underwent a preventive double mastectomy but ultimately, the surgery was not preventive after all. Routine testing of my removed breast tissue revealed that I unknowingly already had 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.
Did you have a support network? If not, how did you overcome it or find it?
My family and friends
Tell me about your treatment process.
I had a double mastectomy and several reconstructive surgeries.
What message would you like to provide women in the community?
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.
What did others close to you do for you that made a difference?
Connecting with the brave and powerful community of online survivors/thrivers/previvors has been one of the most unexpected joys of this journey. Hardly a day goes by when I don’t exchange messages with a woman who has been touched by breast cancer in one way or another. Sharing information and resources, as well as raising awareness of genetic testing for hereditary cancer, has immediate impact on people’s lives, helping us feel more supported and less alone. And that also has a huge impact on our capacity to heal.
Did you join a support group? If so, how did it help?
As a Latina, I hadn’t seen much online or on social media that spoke to me as a woman of color dealing with BRCA and breast cancer, despite the fact that breast cancer is the most common cancer among Latinas. Knowing that Latinas tend to be diagnosed with breast cancer at more advanced stages, in many cases due to lower mammography rates and lack of access to health care, it was important to me that the perspective of women of color be included on the issue and in regards to women’s health in general.
This is why I founded the Well Woman Coalition, an initiative to empower women of color to have agency over their own health and healing, and also LATINX & BRCA, a campaign in partnership with Penn Medicine’s Basser Center for BRCA to raise awareness, provide education and resources, and build support for the U.S. Latinx community. It’s also why I produced and appeared in the health documentary INHERITANCE, which aired earlier this year on PBS and was named one of the Best Documentaries of 2020 by ELLE Magazine. INHERITANCE intimately follows the surgical journeys of three women who are genetically predisposed to breast and ovarian cancer. My wish is for the film’s message of empowerment amidst stacked odds to inspire hope. There are always moments of light and grace, even in the most painful periods of our lives.
Now that you are a survivor, what would you do differently when going through your diagnoses and treatments?
This journey only validated the importance of being proactive and being your own best health advocate.
Now that you are a survivor, how are you living your life differently and why?
My journey with BRCA and breast cancer has been a practice in honoring my intuition. From taking the genetic test to going through with a “preventive” surgery, I turned inward repeatedly for guidance and reassurance. Even when others doubted my decision, I trusted my gut. This journey has been the greatest validation of the value of cultivating that inner voice.
What three things would you tell a person who just yesterday learned of their cancer diagnosis?
Set a reminder and get that yearly mammogram. Do a monthly self-breast exam. Take that genetic test. 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. You are not exaggerating. You are not health obsessed. You are not paranoid. You are saving your life.