Conyers breast cancer survivor encourages Black women to ask about cancer research studies

CONYERS, Ga. - At 41, Faridah Thomas is a survivor.

"It will be three years, Dec. 18 of this year," Thomas says.

In early 2020, the Conyers mother of three, who works in customer services for Delta Air Lines, felt a lump in her breast just as the pandemic hit.

"I just stayed away from all offices, doctors and everything," Thomas remembers.

Then, the pain set in.

"I started to have shoulder pain, and it was crippling," she says. "It felt as if I … slept wrong or did something to it. But, I hadn't."

Thomas was diagnosed with triple negative breast cancer, an aggressive treatment-resistant subtype of breast cancer that disproportionately affects young Black women.

Her cancer was in her lymph nodes, and after interviewing four cancer doctors, Thomas says she found one she trusted with a straight-forward plan.

"I had surgery, a lumpectomy, and they removed 26 lymph nodes," she says.

When she healed, she underwent 31 rounds of radiation.

The treatment worked; Thomas is now cancer-free.

But, looking back, she says her oncologist never mentioned clinical trials. She never asked about them, even though she had been part of a fibroid study years before.

"When you're having a diagnosis of breast cancer, you know, it's your life," Thomas says. "Things get confusing at that time. You're stressed out. You're trying to figure out, you know, what's next."

Still, Thomas says she would have been open to being a part of a research study.

"Because I was comfortable with it already," she says. "I know what clinical trials consist of. So, I would have been, like, 'Sure, sign me up.'"

Maimah Karmo, a 17-year triple negative breast cancer survivor and CEO of the non-profit Tigerlily Foundation, says many people of color are reluctant to get involved in medical research because of a dark history of medical abuse.

Black people make up only less than 5-percent of patients in clinical trials.

"We felt, how do you move past something and make what you're doing bigger than the bad things that happened," Karmo says.

To try to answer that question, the Tigerlily Foundation launched the My Living Legacy educational campaign this fall. Survivors, like Thomas, share their stories in Black spaces, answering questions and talking about the importance of being a part of research studies.

"At the end of the day, it's about you extending your life," Karmo says. "I have friends of mine who have been in trials, and because of different trials, they've been able to have to extend their life from 18 months, to up to 20 years. That's the power of clinical trials."

Faridah Thomas hopes she can inspire women to talk to their doctors about clinical trials.

"Ask all the questions that you can think of," Thomas says. "And, if you can't think of them at the moment, write them down and call them back and say, 'You know what, I have a few more questions.' And, that way you may feel more comfortable with your decision."

Karmo says her organization is not pushing medical research.

Instead, she says, they are opening a dialogue, listening to people's concerns and answering their questions.

"You tell people, 'Listen, we know these things have happened in the past, but if we don't move past them, we're going to stay there, and staying there means higher death rates for people who look like us,'" Karmo says. "'So, do you want to be a part of the past, or healing the past? Move towards a future legacy of healing for Black and brown women, which means getting involved in clinical trials, building better medicines so we have longer lives.'"