By Morgan Carpenter
AFRO Intern
mcarpenter@afro.com
Negleatha Johnson’s journey with sarcoma began more than a decade ago when her sister, Diane, was diagnosed with uterine leiomyosarcoma in January 2015.
Johnson said her sister’s symptoms initially resembled a far more common condition among Black women.
“Diane and her gynecologist believed she was dealing with benign fibroid tumors,” Johnson told the AFRO. “It wasn’t until she had a hysterectomy that it was determined she had uterine leiomyosarcoma.”
The National Cancer Institute describes sarcoma as “a type of cancer that begins in bone or in the soft tissues of the body.” According to the Cleveland Clinic, sarcoma accounts for about 1 percent of adult cancers but at least 15 percent of childhood cancers. With more than 100 subtypes, however, diagnosis and treatment can be especially complex.
As July is Sarcoma Awareness Month, AFRO News spoke with those impacted by the disease in efforts to educate the public about the condition.
Each year, advocates use the month-long campaign to inform the masses. The awareness month also serves as a time to push for early diagnosis, which is critical for improving patient outcomes as these tumors are frequently mistaken for benign lumps or typical sports injuries early on, according to the American Association for Cancer Research.
For Black patients, sarcoma challenges are compounded by broader health disparities and limited research examining how sarcoma affects Black communities. Johnson believes that combination of the disease’s rarity and longstanding healthcare inequities contributes to low awareness.
“Awareness is low across the board because sarcoma cancers are often diagnosed late due to being misdiagnosed early on,” Johnson said. “For Black Americans, we also have to take into consideration healthcare disparities. Not having access to healthcare increases the chances of not knowing about certain diseases.”
Johnson said her sister’s symptoms progressed while she waited to receive health insurance coverage through the Affordable Care Act. By the time doctors performed her hysterectomy in January 2015, the cancer had already advanced.
Despite chemotherapy and radiation treatments, Diane died on May 29, 2016, just 16 months after her diagnosis.
Across the country, many sarcoma patients and families tell a similar story. They describe years of unexplained symptoms, delayed diagnoses, confusion after hearing an unfamiliar medical term and a search for specialists capable of treating one of the rarest forms of cancer.
When Jauwaun Fleuriot heard the word “leiomyosarcoma” in 2021, she had never encountered the disease before.
“I had never once heard of the word ‘sarcoma,’” she told the AFRO. “The more people that are diagnosed with it, the more we need to speak out and sound the alarm that it does exist.”
Fleuriot’s diagnosis also began with what she thought was an issue known to impact women: an unusually heavy menstrual cycle. Doctors eventually discovered a large mass in her uterus and recommended a hysterectomy. She assumed removing the mass would solve the problem.
“I foolishly assumed that that was going to be the end of it,” she said.
Instead, pathology results revealed leiomyosarcoma, a rare cancer that later spread to her lungs. Treatment became a revolving cycle of chemotherapy, scans, surgeries and medication changes.
“I wouldn’t wish chemo on my worst enemy,” Fleuriot said. “It was difficult to manage treatment along with work, family and all the things in life that still happen.”
For Fleuriot, one of the biggest frustrations is not simply living with sarcoma, but the lack of research explaining who develops it.
After her own diagnosis, one of her closest friends, Denise Williams Travers, was diagnosed with the same aggressive cancer. Travers died in June 2026.
“My question is, if it is so rare, how is it that me and my friend also got it?” Fleuriot said.
She later learned another Black woman who attended Fleuriot’s Montgomery County, Md., high school alma mater had also developed sarcoma.
“Maybe sarcoma isn’t a rare cancer,” she said. “Maybe it’s an under-researched cancer.”
Advocates say sarcoma tumors are frequently mistaken for sports injuries, lipomas or other benign conditions, delaying diagnosis until tumors have grown significantly.
Sarcoma Foundation of America CEO Brandi Felser said learning about sarcoma and accessing treatment can be difficult for those who are diagnosed.
“They often find themselves looking for information, and it’s difficult to even find information about it,” she said.
Because the disease is so uncommon, she said, many physicians never treat a sarcoma patient during their careers.
“You can’t just go to any medical oncologist,” Felser said. “Most of them have never seen a sarcoma patient before. We have sarcoma specialty centers across the country but not everywhere. Access to quality health care is really important because patients often have to travel to receive the care they need.”
“If you have a lump and it’s the size of a golf ball, get it checked out,” Felser explained. “Don’t wait on it. Even if someone tells you it’s probably nothing, it’s worth getting it checked out.”
Unlike breast, colon or cervical cancer, sarcoma has no routine screening test.
And there are significant disparities in the incidence of the disease. According to the Colorado Gynecologic Cancer Alliance, “23 percent of African American individuals are more likely to have uterine sarcomas compared to 9 percent of white people.”
Johnson believes research on sarcoma in the Black community should improve.
“We need data comparing when Black patients are diagnosed, treatment options and healthcare access compared to other racial groups,” she said. “We need data that sheds light on the length of time from diagnosis to death for Black patients.”
Fighting cancer … and the medical system
After her cancer spread, Fleuriot said navigating the medical system became almost as overwhelming as the diagnosis itself. Her specialists referred her from one office to another without clear direction.
“I said, ‘Am I on my own here to figure out what happens next?'” she recalled.
She ultimately sought treatment at Johns Hopkins, where specialists familiar with sarcoma developed a long-term treatment plan. The Sarcoma Foundation of America says many patients never realize they should seek out sarcoma specialists.
“We have studies that prove outcomes are better when you make it to a sarcoma specialty center,” Felser said.
The Sarcoma Foundation of America provides educational webinars, patient mentors, travel assistance for clinical trials and physician education programs designed to help community oncologists better recognize and treat sarcoma.
“When we say we represent all patients, we represent all of them,” Felser said. “We want everyone to have the same and equal access to care.”
Limited research remains one of the biggest barriers facing sarcoma patients.
“There are not very many FDA-approved therapies,” Felser explained. “Many patients are being treated with therapies that were approved for other cancers decades ago.”
She said rare cancers struggle to attract research funding because clinical trials often cannot enroll enough participants to satisfy regulatory requirements.
“We’re behind,” she said. “We’re still trying to identify biomarkers in many sarcomas while other cancers are much further ahead.”
Even so, Felser believes momentum is growing.
“When I first started, referred to as ‘The Forgotten Cancer,’” she said. “Now we’re seeing more pharmaceutical investment, more research investment and more focus from the FDA and National Cancer Institute.”
Patricia McCarter’s diagnosis followed a different path but ended with the same unfamiliar word.
Years earlier, she had noticed what she described as a “funny, squishy thing” on her thigh.
“I told my OB, ‘I got this little squishy thing on my thigh,'” McCarter recalled. “She kind of touched it and threw it off. She wasn’t worried about it, so I wasn’t worried about it.”
Over time, the lump grew larger.
“It was like a knot,” she said.
After an ultrasound revealed a mass, doctors began searching for answers.
“I remember reading something that said ‘mass,'” McCarter recalled. “My mind started wondering, ‘What is a mass?'”
Life after sarcoma
Today, Fleuriot is not receiving active treatment while exploring future clinical trial options. Rather than focusing on uncertainty, she is spending time with family and celebrating milestones she once feared she would never reach.
“I’m going to enjoy my birthday,” she said. “We’ll deal with the cancer stuff after that.”
McCarter has adopted a similar philosophy.
“It’s not a death sentence,” she said. “Don’t stop living just because you got the diagnosis.”
She encourages others to spend time with loved ones, travel when they can and not postpone joy.
“Life literally is too short,” McCarter said. “Go on the trip. Eat the ice cream. Enjoy life every day that you can.”
Johnson hopes Black families will advocate for themselves when something doesn’t feel right.
“Don’t make assumptions about your health,” she said. “If you don’t feel a sense of peace about what your doctor is telling you, keep asking questions. Have someone who can advocate with you. Supporting my sister during the most difficult time in her life was never a question for me. I wasn’t going to let her go through it alone.”
