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Research Is the Reason I Could Be Proactive

By BCRF | October 22, 2021

After watching her mother die from breast cancer and her sister and friends be diagnosed, Maya made a choice to reduce her risk of the disease

In her mid-30s, Maya Rockeymoore Cummings had a lump in her breast biopsied. Though that lump turned out to be benign fatty tissue, doctors discovered, in the process, that she had LCIS (lobular carcinoma in situ: a collection of abnormal cells in a person’s milk glands). 

Though uncommon, LCIS can indicate that a person is at a higher risk of invasive breast cancer in the future. Maya’s doctors recommended she begin anti-estrogen hormone therapy, which she declined and instead begin a stepped-up screening schedule.

“I had never heard of LCIS,” said the social change strategy consultant and wife of the late U.S. Representative Elijah Cummings. “I had a mixed reaction because I was relieved the lump was fatty tissue and not cancer. But at the same time, I was stunned I had an underlying risk for breast cancer.”

Maya’s paternal grandmother had been successfully treated for breast cancer previously, but she hadn’t thought of herself as having a significant family history of the disease.

“The women on my mother’s side of the family, at that time, didn’t think we were at a high risk, and we hadn’t discussed breast cancer as something we should be watching out for other than in the context of Breast Cancer Awareness Month outreach and just trying to be a good steward of your health,” she said.

That would, unfortunately, soon change. In 2015, her “brilliant, imposing” mother was diagnosed with metastatic inflammatory breast cancer at the age of 69.

“I was with her the night she died, and it was just traumatic—one of the saddest moments of my life,” Maya said.

Just a few years later, Maya’s younger sister, a physician, was diagnosed with stage 2 breast cancer in her 40s and underwent chemotherapy, radiation, and surgery. Around the same time, a close friend, Katrina, was diagnosed with metastatic breast cancer after initially being diagnosed with ductal carcinoma in situ and undergoing surgery. (Similar to LCIS, DCIS is another precursor to invasive breast cancer.)

Like many people, Maya had read about actress Angelina Jolie’s decision to get a preventative double mastectomy because of her BRCA1 mutation status.

“I tucked that into the back of my mind,” Maya remembered. “And then everything happened with my family and Katrina in a short period of time. I was the first one in my family to be told I had a high risk for breast cancer. Suddenly, I was desperate to do something proactive to take charge of my health.”

Maya interviewed several surgeons and scheduled a double mastectomy just before her husband tragically passed away in 2019. In a short span of time, Maya weighed whether to run for her husband’s Congressional seat and continue with the surgery as planned. She did both—and decided to go public about her health choice.

“I had just seen my husband keep his cancer quiet for more than 20 years and die from it, and it just saddened me to see him go through that knowing that everybody who loved him could not be supportive,” she said. “I thought, ‘Life is short. It’s important to be transparent and share my story.’”

Since that time, Maya has undergone reconstruction and become even more of an advocate for women’s health.

“My big regret is not being more emphatic about taking that LCIS diagnosis more seriously for my sister and my mother,” she said. “I wish I did everything to learn about it. We didn’t know what to do with the information at the time. In hindsight, it was a warning for all of us.”

Today, Maya supports research into breast cancer disparities, genetics, and more.

“We need more research because we don’t know enough,” she said. “We don’t know what causes the earlier incidence of breast cancer in women of color or why Black and Latina women are diagnosed at earlier ages but in later stages. We have major gaps when it comes to genetic testing. There are questions that need to be answered.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.