16-Year Triple Negative Breast Cancer Survivor And Tigerlily CEO Maimah Karmo, 47, Shares Her Incredible Story of Overcoming Adversity: ‘I Dreamed Of Making A Difference’

"If I waited, I would be dead today," she told SurvivorNet during an exclusive interview.

Advocating for Yourself While Navigating the Medical World

Karmo would later find out that she had stage 2b triple-negative breast cancer, and since she was denied screening for so long, her tumor doubled in size in just six months. She had no history of breast cancer in her family, but at 31 years old, Karmo was diagnosed with one of the most aggressive forms of the disease.

"The impact on me was I was shell shocked, I was so shaken and scared. I didn't know what to do," she said. "It was lonely because as I began to understand triple-negative breast cancer, there were not many women who were triple-negative breast cancer patients, there were not many women who were young … and there were not many who were Black (women)."

"Not only was I dealing with the kind of cancer that was very aggressive and didn't have targeted treatment," she continued, "I had no one I could talk to, who could say to me, 'Maimah, I'm here, I'm 15 years out, I'm 16 years out, you could be too.'"

She decided to become that person for herself, and for others. While undergoing her second round of chemotherapy, Karmo started the Tigerlily Foundation to educate, empower, advocate for and support young women affected by breast cancer.

Since she advocated for herself, her cancer was caught earlier than most, and in late 2006, doctors declared her cancer-free. Karmo, a native of Liberia, West Africa, is now a 47-year-old mother and cancer survivor. She is also chief executive officer of the foundation she started 16 years ago.

In those 16 years, she has spoken on Capitol Hill as a health, advocacy and empowerment expert; worked with the U.S. Centers for Disease Control and Prevention to launch national campaigns; served as an Ambassador for National Women's Health Week; collaborated on a national awareness campaign, Uncovering TNBC, to shed light on disparities in cancer care and offer resources; and so much more.

"I realized the power I had to make a difference in the world and to impact those who are underserved, particularly young women and women of color Black women and also with my disease state that I had triple-negative (breast cancer)," Karmo said.

"I dreamed of making a difference in this way, but I didn't think it was possible. I didn't really know. But you don't know what you're capable of until your back is against the wall."

Thursday, March 3 is Triple-Negative Breast Cancer Day. To commemorate the day, Karmo shared her story with SurvivorNet to raise further awareness and "empower other women and girls to embody the power of one."

What is Triple-Negative Breast Cancer?

Pushing for a Diagnosis

While performing a breast examination on herself in 2005, Karmo found a lump. She immediately sought medical attention from her OB-GYN, who referred Karmo to a breast surgeon.

For months, Karmo pushed the breast surgeon for a mammogram the process used to examine breasts for cancer diagnosis and screening. There was a hard lump in her right breast that wasn't there months earlier; she knew something wasn't right, and she wanted it out. But the breast surgeon said no.

"It can't be breast cancer, you're too young. Wait until you're in your 40s," Karmo recalls being told.

Karmo was in her 30s at the time, which is relatively young to receive a breast cancer diagnosis. Organizations such as the CDC and American Cancer Society recommend women start getting yearly mammograms when they turn 45 years old. Women ages 40 to 44 should have the choice to start annual breast cancer screening, but women ages 45 to 54 should get a mammogram every year.

When Should I Get a Mammogram?

Karmo kept pushing, and finally, the surgeon agreed to do a mammogram. But the results came back inconclusive. Karmo again kept pushing. This time, she wanted a biopsy done to confirm what she already knew to be true. But still, her doctor said no.

As a Black woman, Karmo knew that Black women are more likely to have dense breasts, and mammogram technology in 2006 wasn't advanced enough to reliably detect cancer in dense breasts, she said.

In fact, according to a recent American Cancer Society report, Black women are 41% more likely to die from breast cancer than white women, despite a lower risk of being diagnosed with the disease. (Overall, the risk of cancer death for Black individuals remains 19% higher for men and 12% higher for women compared to white people; this is partly due to later stage diagnosis.)

More specifically, 57% of breast cancer in Black women is detected at a localized stage compared to 67% of cases in white women, contributing to the lower overall five-year survival rate, which is 82% for Black women versus 92% for white women, according to ACS.

Several more months would pass before the breast surgeon agreed to do a biopsy of Karmo's lump. The day after the biopsy, she received the call.

"She couldn't even say the words 'you have breast cancer,' her exact words were, 'you have cancer in your breast,'" Karmo said. "I was just so insulted and angry and shocked. If I had taken her advice, we wouldn't be having this conversation today."

Going Through Treatment

After the biopsy confirmed her triple-negative breast cancer, Karmo started down another road. This time, that road led to being cancer-free.

She told SurvivorNet that after she received her diagnosis, she "fired" the breast surgeon who refused her screenings for so many months. The next breast surgeon she visited recommended she get a mastectomy surgery that removes the entire breast.

"Surgery like that is fairly extensive," Karmo said. "If you have to have it, it could be life-saving, but sometimes it's not life-saving; you could still have a mastectomy and have breast cancer recur in one or more breasts."

Should I Have a Lumpectomy or Mastectomy?

Choosing what kind of breast cancer surgery to have is a very personal choice.

Dr. Sarah Cate, a breast surgeon at Mount Sinai Health System, previously told SurvivorNet that as a breast surgeon, "my job is (to help patients) understand that their long-term survival with mastectomy is equivalent to that with lumpectomy and radiation."

Karmo educated herself on the risks of having a mastectomy and opted instead to have a lumpectomy surgery to remove cancer or other abnormal tissue from your breast.

After Karmo had her lumpectomy, she went through multiple rounds of chemotherapy and radiation before being declared cancer-free in late 2006.

Chemo for Triple-Negative Breast Cancer

Understanding Triple-Negative Breast Cancer

Triple-negative breast cancer is one of the most aggressive forms of the disease and accounts for about 20% of all breast cancers.

If you've been diagnosed with this type of breast cancer, it means your cancer isn't being fueled by any of the three main types of receptors commonly found in breast cancer estrogen, progesterone or HER2 protein. Because of this, the cancer won't respond to certain targeted therapies including hormone therapy or Her2-targeted agents. Chemotherapy is typically the treatment for TNBC.

Triple-negative breast cancer disproportionally affects younger women and women of color like Karmo. It also accounts for a higher percentage of breast cancer deaths with a higher rate of recurrence, according to Dr. Nancy Chan, a breast oncologist and director of breast cancer clinical research at NYU Langone's Perlmutter Cancer Center.

To learn more about the Tigerlily Foundation and check out its various programs, visit tigerlilyfoundation.org/programs.

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