WASHINGTON — It’s been 16 years since Maimah Karmo received a phone call from her doctor that would change the trajectory of her life. 

“She called me at work to tell me it was in fact breast cancer — my whole world stopped,” Karmo said in an interview with Spectrum News in her home. 

It was information Karmo already knew. The road to that phone call was not easy. After she found the lump in her breast, doctors repeatedly advised her against screening since she was only in her early 30s at the time. 

“You can’t have breast cancer, you’re too young to have breast cancer, you should wait," Karmo said. "I said, 'I want this out of my body,' so I kept pushing. It took me over six months to get a biopsy, over six months."

She was diagnosed with stage 2b triple negative breast cancer, a very aggressive form of the disease. In the six months it took to get it checked, the tumor doubled in size.

“I know for a fact that if I had not been as vigilant as I was and as proactive, I would be dead today,” Karmo said.

Karmo formed the Tigerlily Foundation to support young women with breast cancer, especially Black women who need more resources and support.

“It hurts my heart to think that because of lack of access, education, therapy, provider bias, people being dismissed, denied, delayed, women of color, Black women die every single day because someone told them to wait,” she said.

According to the American Cancer Society, African American women are 40% more likely to die of breast cancer than white women and are twice as likely to die if they’re over 50. While biology is partially to blame, others say there are racial disparities when it comes to early breast cancer screening. 

“If someone encounters a provider who is not taking them seriously or they truly feel something is wrong, I counsel them to get a second opinion,” said Dr. Leisha Elmore, a breast surgical oncologist with PennMedicine. 

Elmore said it is  crucial for women to be their own advocate when they suspect a change in their body.

“Triple negative breast cancer in the past, it’s maybe dramatic to say, but it was a death sentence because patients did not do as well,” she said. 

“We know if it’s caught in an early stage, over 90% of those patients are alive at five years,” Elmore added.

“There was not as much of a focus on health disparities when I was diagnosed,” Karmo said, who just celebrated being 16 years cancer free this week.

She was declared cancer free toward the end of 2006. She said her early diagnosis helped — now, she wants to empower young Black women to take control of their health and to provide the resources they need to fight and survive. 

“Triple negative is a really big problem for Black women," Karmo said. "We are dying at a 40% higher rate than white women."

“No one should die more than another person because of lack of access, resources, health literacy, or targeted treatment,” she said.

Additional resources available to help Black women navigate a triple negative breast cancer diagnosis can be found at UncoverTNBC.com.