"If you have some reason to believe that you may be high risk for developing breast cancer, have several family members who have battled the disease, or have any rare cancers in your family, such as ovarian and pancreatic cancer, consider taking a genetic test."

By Michael Quiñones
June 14, 2019 08:58 AM
Photo by The Washington Post

What would you do if you found out that breast cancer is in your genes?

What if you have more than one family member who has already died from the disease?

Would you take preventive measures?

What if a preventive double mastectomy would drastically reduce your chances of developing breast cancer to around 3 percent?

These are the questions Alejandra Campoverdi faced when she discovered she carried the BRCA2 gene mutation, which raised her risk of developing breast cancer to 85 percent.

The former Obama White House staffer understands everything that goes into this decision — she just made it herself. That’s why she founded groundbreaking initiatives to raise awareness of hereditary cancer and encourage an empowered approach to health for women of color and the Latinx community in particular.

This is also why she might begin this article with a different question: What if you never knew you had an 85 percent chance of developing breast cancer?

Alejandra has witnessed the answer to that question first-hand.

A relentless breast cancer gene

Not long after Alejandra Campoverdi was born, her great grandmother died of breast cancer while in her 70s. Campoverdi’s maternal grandmother Maria Luisa Medellin, whom she called Abi (short for Abuelita), was a second mother — walking her young granddaughter to school — and the family matriarch. Alejandra was 16 when Abi died of breast cancer while in her 60s.

Campoverdi tells CHICA: “At first, Abi didn’t tell anyone about the lump she found in her breast because she didn’t have health insurance and she was worried about burdening our family with out-of-pocket costs. Also, she grew up in Mexico and had a very different cultural perspective of doctors and our healthcare system. When she finally found the courage to see a doctor, it was too late and the cancer had spread throughout her body. She died just months later, devastating our family.”

An emerging pattern became even more apparent when Alejandra’s mother was diagnosed with breast cancer at age 49. Alejandra, who was in her early twenties then, says, “We thought that a cancer diagnosis was an immediate death sentence because that’s what our previous experience had been.” But thankfully, after chemo and a lumpectomy, her mother beat the disease. Two of Alejandra’s aunts also have battled breast cancer.

Recognizing that there was likely a hereditary component to the recurring breast cancers in her family, Alejandra asked to be tested for the BRCA gene mutation, which causes increased risk for breast and ovarian cancers. When she tested positive and learned she had an 85 percent risk of developing breast cancer, Alejandra decided to take action.

“Older generations in my family lost their fight against breast cancer, the next generation was able to beat it but suffered through the experience because of access issues and treatment. And so now, as the fourth generation in this battle, what is it that I can do to push the needle forward? For me, the answer was A, to undergo a preventive surgery to reduce my risk, but also B, to do everything in my power to raise awareness for Latinas around hereditary cancer and women’s health. I know that my family’s story is not unique.”

Alejandra underwent a preventive double mastectomy in October 2018, removing both of her seemingly healthy breasts. But she tells CHICA the major plot twist:

“Six days after the surgery, I received a call from my doctor. It’s routine to test the breast tissue that has been removed during a preventive double mastectomy to make sure that nothing was missed. We were shocked to learn that I had unknowingly already had Stage 0 DCIS breast cancer before my surgery. I was caught completely off guard because I had recently had a mammogram, breast MRI, and a breast ultrasound and all had come back clear. It was such a validation of my decision to be proactive about my health. I beat breast cancer before I even knew I had it.”

Alejandra’s experience, and that of her family, led her to launch an initiative to empower women of color to take charge of their own health and healing. As she explains to CHICA, there are three points that define her mission at the Well Woman Coalition, which she founded in fall 2018: arm yourself with information, make empowered choices, and save your own life.

Her latest initiative

The major statistics driving her latest project? Latinx/Hispanic women are diagnosed with breast cancer at a lower rate than non-Hispanic white women, but they die from it at a higher rate. This is mainly due to a delay in detection. Another stat, one that justifies a specific focus on POCs: women of color make up more than 70 percent of women in L.A.

“You don’t often see Latinas reflected in national breast cancer awareness efforts. That needs to change. Breast cancer is the most commonly diagnosed cancer amongst Latinas. And Latinas are more likely to be diagnosed with breast cancer in advanced stages,” she says.

Last month, Campoverdi created the Latinx & BRCA campaign by partnering with Penn Medicine’s Basser Center for BRCA. Latinx & BRCA is the first awareness campaign on the BRCA gene mutation that targets the Latinx community specifically and offers Spanish-language resources, including videos and educational materials.

Origin story

Alejandra Campoverdi’s focus on giving back to her community no doubt has its roots in her upbringing.

Her family emigrated from Mexico shortly before she was born. Since her father was out of the picture, she was raised by her mom and her grandmother in a small apartment crammed with up to eight other family members at times. “Like many, I grew up in a home where access to health care was not a given. …at times during my childhood, we had to rely on public assistance such as Medicaid just to see a doctor,” she tells CHICA.

She went on to thrive in high school: high honors, class president and homecoming queen. She attended the University of Southern California’s Annenberg School of Communication and earned her master’s from the Harvard Kennedy School of Public Policy. After graduating, Alejandra was tapped by the Obama White House in 2009 to become the first White House Deputy Director of Hispanic Media. She went on to work as a media executive at Univision and The LA Times.

But what seems like a fairy tale was much harder than it sounds. “There were a lot of risks that I had to take with no safety net. In order to attend Harvard, I relied completely on student loans.”

Running for office

In 2017, Alejandra ran for U.S. Congress in California, motivated by President Trump’s election and the potential repeal of the Affordable Care Act. In her ad “Why,” she stands with her mother and talks about how personal the debate about health care is for millions of Americans.

She didn’t expect to share her BRCA status as a part of the campaign but realizing what was at stake, Alejandra couldn’t just stand on the sidelines. “It was one of those moments where, like a lot of people, I thought ‘what can I do to help’?”

Although she didn’t win, she would consider running again. “If there were an opportunity in the future where I felt I could make a difference, I would do it again. The more people who run that aren’t from your typical linear backgrounds, the better. We all benefit from having diverse perspectives at the table.”

Multiple surgeries

When CHICA first spoke to Campoverdi in September 2018, she was recovering from the first of several surgeries. Though she had not yet tested positive for breast cancer, she had begun the preventive double mastectomy process.

Campoverdi, a certified holistic cancer specialist well-versed in her medical procedures, explained her recent nipple delay procedure as one that was intended to protect against skin necrosis. Not everyone having a mastectomy undergoes a nipple delay, which takes place two weeks prior to the main surgery, but her doctor, Kristi Funk (who also treated Angelina Jolie during the same procedure), recommended it.

The 39-year-old described the weeks in between her surgeries as a limbo: “I feel like I’m in a bit of a holding period. I’ve already started the process. The incisions have been made … but we haven’t gone all the way yet.”

After years spent preparing to have surgery — she tested positive for the harmful BRCA2 gene in 2013 — the time had finally come. But a recent development had re-affirmed her decision: One of her aunts had just been diagnosed with breast cancer only a week earlier.

Sharing her mastectomy story

Another public service Campoverdi is providing? Chronicling her medical journey on Instagram, in video format for the L.A. Times, and of course, for CHICA. She explains her reasoning:

“When you’re facing something like this, the sense of the unknown can be scary. Being able to relate to other people’s experiences makes everyone feel less alone. I want to share this journey in a completely honest and real way, and raise awareness of hereditary cancer in the process. And that’s why I’m pulling back the curtain on Instagram. I’ve connected with so many women around the world in the process.”

When we spoke to Campoverdi again post-surgery, she gave us the details, starting with the days prior to removing her breasts. “There were definitely some hard nights when the enormity of the decision you’ve made hits you. But I just knew in my gut that I was doing the right thing. I’m so grateful I listened to my intuition.”

She not only prepared her body but prepared emotionally and spiritually as well.

Visiting her grandmother Abi’s grave helped: “I had the rosary that she gave me before she died of breast cancer…. And I sat there, talked to her and asked her to be with me, to be by my side throughout this journey. And that gave me a lot of strength.”

Healing 

Campoverdi was proactive about her healing too. “I tried hyperbaric oxygen therapy, drank celery juice daily, and took mega doses of vitamins and supplements to help my healing along.”

“In the beginning, you are pretty restricted. You can’t lift your arms or carry anything over 5 pounds. You can’t open the fridge or a heavy door. You can’t even shower on your own.”

Exhaustion from simple tasks was also a factor: “I could barely walk upstairs initially. I just didn’t have the energy. I was a couple of weeks out of surgery and my uncle and cousin came to visit me. It was the first time I ate out in weeks and I was so drained afterwards that I napped for four hours.”

Advice for those looking at similar surgery

Campoverdi shared her coping strategies and the overall perspective she cultivated: “No single part of our bodies — including our breasts — define our femininity. Our femininity is grounded in our courage and resilience and grit.”

She realized that she could find agency even when she felt things were out of her control. “Through the years, I’ve learned the power of transforming pain into purpose. We each have the power, even when facing a difficult diagnosis, to direct our approach to our own health and healing.”

The takeaway

“If you have some reason to believe that you may be high risk for developing breast cancer, have several family members who have battled the disease, or have any rare cancers in your family such as ovarian and pancreatic cancer, consider taking a genetic test. What you do with that information is up to you, but knowing either way can influence your screening and lifestyle choices. It puts you in the driver’s seat. Whether related to hereditary cancer or to women’s health in general, my message to Latinas is this: Be the CEO of your body.”

Message Alejandra through wellwomancoalition.com to receive a 20 percent discount on a hereditary cancer genetic test.

 

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