Breast Cancer Is Killing Black Women at Alarming Rates

The Tigerlily Foundation, an advocacy organization supporting young women diagnosed with breast cancer, wants to help close the racial disparities in diagnosis and treatment.


Maimah Karmo was diagnosed with Stage II breast cancer when she was 32. Before that she thought she’d achieved the picture-perfect American dream: An African immigrant who fled war-torn Liberia as a teen refugee in the late 1980s, she’d worked her way up the ladder and had a successful corporate job. She was living in a spacious townhouse in Northern Virginia with her long-time fiancé and raising their beautiful 3-year-old daughter.

After months of feeling fatigued, Karmo found a small lump in her breast during a self-exam. She had no family history or previous health issues. An ob-gyn told her it was probably nothing, to go “live her life” and follow up in six months if the lump was still there. But something didn’t sit right with Karmo. After repeated asks, she finally got a referral for a mammogram and then a biopsy. One day at work, she got back to back messages on her work and cell numbers from the specialist. She froze. She had invasive stage II, triple-negative breast cancer.

“I had escaped war in Liberia years ago. And now there were little cells in my body battling each other—the war was now literally inside of me,” Karmo says. “I always worried about being safe. I was terrified that I’d die and leave my daughter motherless.”

Black women and white women get breast cancer at about the same rates but “it’s a known fact that African-American women have a higher breast cancer risk,” says Dr. Jennifer Webb, a radiation oncology specialist, at the Bronson Battle Creek Cancer Center in Battle Creek, Michigan. Breast cancer death rates are 40% higher in Black women, according to the Centers for Disease Control and Prevention. Breast cancer is typically caught later in Black women than it is in white women and is also more likely to be aggressive: Rates of triple-negative breast cancer, an aggressive form of the disease that often comes back after treatment, and metastatic breast cancer (stage IV breast cancer), which is a terminal diagnosis, are higher in Black women.

Living with metastatic breast cancer (MBC) is a daily challenge for Shonte’ Drakeford, 36, who was diagnosed with stage IV breast cancer in 2015. She had worked as a nurse for years—now, she was also a patient. MBC is a terminal diagnosis but “women with MBC are living longer,” says Dr. Lori Pierce, a radiation oncology professor at the University of Michigan and president of The American Society of Clinical Oncology. “Our therapies are getting better and better in terms of lengthening survival.” Much of that is due to advances made in clinical trials but importantly, “clinical trials often have only a small percentage of people of color,” Dr. Pierce says. “We want to change that.”

“Stage IV metastatic breast cancer is forgotten and unspoken. It’s seen as the scary cancer,” Drakeford says. “But for the five years I’ve had this disease, sharing my knowledge with others gives me strength.”

She’s also turned to the Tigerlily Foundation, one of the only global voices for young women facing breast cancer, including MBC. Karmo founded the Tigerlily Foundation in 2006, frustrated with the lack of resources for young women with breast cancer. The Virginia-based foundation hosts events, provides health resources online, and delivers hope baskets and financial assistance to a diverse group of young women (ages 15 to 45) across the country struggling through the disease. When the coronavirus hit the U.S., Karmo went into a social media overdrive to reach as many young breast cancer patients as possible. Routine appointments were, for the most part, being canceled or rescheduled, creating a patient backlog. Now, nearly eight months later, many medical professionals are concerned about the number of women getting their annual screenings continues to be low. “Please do not skip your annual mammogram. If you missed it, do not wait another year—get an appointment as soon as you can,” says Dr. Webb. (The American Cancer Society recommends women start getting yearly mammograms at 45, but if you have a family history, Dr. Webb advises talking to your doctor about getting screened before 40.) “If you have a lump and your primary care physician or ob-gyn says wait six months, don’t wait. Go to a specialist,” Dr. Webb says. “When women get diagnosed early, their treatment is typically very successful. Be your own advocate.”

Karmo did advocate for herself, but it was still a challenge to be heard. Doctors told Karmo that even with treatment, her prognosis with triple-negative breast cancer was uncertain. “There were no promises. They would do surgery, then chemotherapy, then radiation. There were no guarantees,” Karmo says.

After months of grueling treatment, Karmo, felt isolated and alone. After she lost all of her hair, eyebrows, eyelashes, and much of her self-confidence, her fiancé left her. Constantly nauseated from the chemo, Karmo cried in the shower, because she didn’t want her young daughter to see.

In the midst of heartbreak and financial struggles, Karmo’s medical team told her good news: The cancer had not spread. She was on the path to recovery. Karmo’s mother and other relatives were extremely supportive during the whole treatment process. But after she recovered, some of her relatives thought she should stop talking about her health scare. “My family was very supportive in terms of taking care of me physically. But there were also psychological needs,” she says. “People think, ‘Okay you are done. You’re better now.’ People want to forget about it and move on.”

Patricia Fox, 33, also knew the isolation of battling breast cancer as a Black woman. She was diagnosed when she was only 26. Though she had a family history of the disease, her diagnosis was still a shock. Not only did she have to make medical decisions quickly, she also decided to freeze her eggs in the event that she might later experience fertility problems due to the treatment. Fox had a lumpectomy, 16 rounds of chemotherapy and radiation and she was finally declared cancer-free.

“We need to stop thinking that our health issues should be private and kept only to ourselves,” she says. “Don’t wear the superwoman costume, take off the cape.”

Ultimately, this is why the Tigerlily Foundation exists. During her treatment, Karmo was eager to connect with others and serve as a source of information. “I wanted to create a space for women that would help them know they were strong and beautiful. I want to support them through their medical journey, to be their justice warrior and champion. To speak up for them,” Karmo says. Post-cancer, Karmo was featured by Oprah Winfrey and partnered with Congresswoman Debbie Wasserman Schultz for the EARLY Act, which aims to “better educate and assist young women who may be affected by breast cancer.”

Karmo is also advocating to end the racial disparities in breast cancer diagnosis and treatment. “Thousands of us are here and we want to end the health disparities among survivors of color,” she says. In 2019, the Tigerlily Foundation launched the #InclusionPledge, a promise to “only participate in advocacy initiatives that include the experience of African American women.” Pre-pandemic, they launched fireside chats to share the experiences of women of color with doctors, nurses, and cancer researchers. “It is unacceptable that certain populations experience disparities with cancer outcomes,” said Karmo. “This pledge further empowers women of color, giving them a seat at the table.”

Posted by on Nov 13 2020. Filed under Community News. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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