Chadwick Boseman’s tragedy is America’s tragedy: In colorectal cancer hot spots, young men are dying at higher rates

Three months before “Black Panther” star Chadwick Boseman died from stage 4 colon cancer at age 43, another young Black idol succumbed to the same scourge. Omhar Carter was a beloved youth basketball coach who trained and mentored promising players for more than 20 years in his hometown of Jackson, Miss. He was to the basketball scene in Jackson what T’Challa was to Wakanda.

“He was the guy that everybody came to to get better — there were so many lives that he touched,” said Shay Hodge, who was coached by Carter when he was 16. Hodge, now 33, credits Carter with steering him and many other troubled teenagers in the right direction, including some onto the rosters of college and pro teams. “We all looked at him like he was a superhero.”

Carter was diagnosed with stage 4 colon cancer in the fall of 2019 and passed away in the spring of 2020 at age 46. Like Boseman, he led a physically active lifestyle at the time of his diagnosis, often lifting weights and running drills on the hardwood with his players. He did not smoke and was not a heavy drinker.

But also like Boseman, Carter lived in a part of the country researchers have labeled a “hot spot of death” for early-onset colorectal cancer. Anderson County, S.C., where Boseman grew up, and Hinds County, Miss., where Jackson is located, are two of 232 counties in the mainland U.S. where men aged 49 and under are at unusually high risk of dying from colorectal cancer, according to a study published last year in the American Journal of Cancer Research. The researchers also found that compared with white men, Black men in these hot spots who have colorectal cancer are more likely to be diagnosed with advanced stages of the disease and less likely to survive it.

For many young, healthy people like Carter, colon cancer was never on their radar because it is typically seen as a disease that affects older people. But since the 1990s, even as colorectal cancer rates have declined for people 50 and older, they have more than doubled among American adults under 50, according to the National Cancer Institute. By 2030, predicts a study published in April, colorectal cancer will be the leading cause of cancer-related deaths in people aged 20 to 49. The reason behind the rise remains a mystery.

“We don’t know where this is coming from,” said Charles R. Rogers, an assistant professor of public health at the University of Utah School of Medicine and lead author of the hot spots study. “Just like we don’t really know why Black people have the highest chance of getting and dying from it.”

By studying these “hot spots of death,” Rogers and his colleagues hope to better identify reasons for these trends. So far, they have found a strong link between smoking and early-onset colorectal death in the hot spots, which are almost all in the South. Smoking, though, is just one of many factors propelling the rising rates of early-onset colorectal cancer, Rogers said. He’s also found that obesity and lack of access to healthy foods may be contributing factors, but he believes there are others as well, like consumption of high-fructose corn-syrup. Still, there are young people with few or none of these risk factors who are dying from colorectal cancer.

As to why Black men at all ages are more likely to die from the disease, Rogers said the issue is also multilayered. “There’s a whole lot of factors that contribute,” he said “like masculinity, poor patient-provider communication, embarrassment, fear, fatalism.” Many are unaware if their family has a history of colorectal cancer, which raises one’s own risk for the disease. As a result, they often ignore possible symptoms of colorectal cancer and delay getting screened. For many Black men, just talking about preventive measures like colonoscopies, or symptoms like bleeding from the rectum or a change in bowel habits, can be uncomfortable because it deals with such an intimate part of the body.

Such was the case with Carter. By the time his cancer was discovered, it was advanced and much harder to treat. Late diagnosis can especially be a problem with younger individuals like him who don’t recognize their rising risk. Doctors and nurses sometimes don’t think their young patients are at risk, either.

“Hopefully this will get more attention so that people know that colon cancer is no longer an old person’s disease,” said Rogers. “It’s starting to get traction. But unfortunately, it only really gets traction when somebody dies.”

Standing 6’4” and weighing about 275 pounds, Omhar Carter commanded attention when he walked into a room. Equally noticeable were his sparkling eyes, wide smile, and larger-than-life personality, said his wife J’Haun Carter, who he lovingly called his Jo.

Growing up, Carter had his own hoop dreams. He was a high school standout and later played basketball overseas for a while before a knee injury benched his professional career. He came back to Mississippi to finish up his studies at Mississippi College and began to coach youth basketball in the rougher parts of Jackson. It became his passion.

“He got on it like a dog with a bone,” said J’Haun. It was his reason for getting out of bed in the morning, she said, and it made him happy because he felt he was changing lives. In 2002, he founded the Mississippi Basketball Association, an affiliate of the Amateur Athletic Union, to help young men, especially those whose childhoods had been difficult, pursue their basketball aspirations. It attracted top players from across the state and helped train future NBA ballers like Monta Ellis and Rodney Hood.

“Jackson, Mississippi, is basically the mecca of basketball in Mississippi,” said Hodge, who moved there from a small town to play under Carter’s tutelage. Hodge was already a good basketball player when he joined Carter’s AAU team, MBA Hoops, but he said Carter’s repertoire of moves and strict standards enhanced his game on every level.

“He demanded greatness out of you, and if he wasn’t gonna get it, he was gonna fuss and literally fight you over your success in trying to get better,” said Hodge.

Carter wasn’t without his detractors, who questioned some of his recruitment practices in Jackson’s competitive AAU basketball scene. But to much of his community he was a mentor, father figure, and friend who poured everything he had into his players.

That often meant hitting the gym at four or five in the morning before anyone else was shooting hoops, and coaching after-school practices past when most others had already left. Or taking his team on long trips out-of-state for tournaments. Carter’s commitment to his players put many things in his life on pause, like important doctors’ visits.

“He was just really dedicated to the gym,” said J’Haun. “So if there was an appointment at the same time that he was supposed to be working kids out, he went to work the kids out.”

In 2018, J’Haun recalled, Carter had seen blood in the toilet. It was infrequent and he was uncomfortable discussing it. But she was concerned. She made an appointment for Carter to see a physician, who then arranged for him to see a gastroenterologist. But Carter had an aversion to doctors that stemmed from watching his mother struggle through treatment for lung cancer when he was about 30. “It really freaked him out,” said J’Haun.

He skipped the appointment.

Carter’s bleeding became more frequent and heavier and he would feel weak. In August 2019, he sprained his knee while chasing his young daughter around the house. He went to the emergency room. There, he divulged to the doctor and nurses tending to his knee that he had been experiencing bouts of profuse bleeding from his rectum. “This is not like bright red on the tissue. This is like, the whole toilet looks like a woman’s menstrual cycle, to be graphic,” said J’Haun.

But Carter wasn’t bleeding at that moment in the ER, so the doctors didn’t take any further action despite the details he and J’Haun provided. “They wrote it off and told him that it sounded more to them like hemorrhoids or something of that nature,” said J’Haun.

“They just really didn’t listen to it,” she added. “They didn’t feel like it called for even a fecal swab.”

In early September, Carter started coughing so hard it made his head hurt. He went to an urgent care clinic. They gave him medication that cleared it up for a bit, but the cough returned a couple of weeks later. On Sept. 28, Carter went back to the clinic, and received a chest X-ray. It revealed spots on his lungs. The staff told him to drive to the ER immediately. Along the way he called J’Haun.

“He said, ‘Listen, you’re gonna have to meet me at the emergency room, because they did a chest X-ray, and whatever they saw, it wasn’t good,’” J’Haun recalled him saying. “When we got to the emergency room, they did a CT and found out that he did have a massive tumor in his colon. And that it was already spreading to his liver and his lungs.”

Charles Rogers has spent much of his career encouraging Black people — men specifically — to care about their colon. Colorectal cancer is the second deadliest cancer for men and women in the U.S., but caught early enough, “it’s preventable, treatable, and beatable,” he likes to tell people. The five-year survival rate for those with stage 1 or 2 is about 90%. When found at stage 3, that survival rate drops to about 70%, and at stage 4, it plummets to just 14%.

Rogers is from rural North Carolina, where, as he puts it, there are chicken houses and no streetlights. In 2009 he saw firsthand how destructive colorectal cancer could be.

That summer he was at a family reunion eating hot dogs and Cha-Cha-Sliding with loved ones, when he noticed his aunt Joann had lost a significant amount of weight. Three or four months later, and after a succession of misdiagnoses, they discovered the reason: She had stage 4 colorectal cancer, at age 52.

Over the next eight years, Rogers watched his aunt go from being bedridden, to needing an ostomy bag, to developing enough strength to live on her own again, to finally having the cancer spread to her brain. Tumors in the colon grow slowly, typically taking seven to 10 years to turn from a small polyp into a tumor. Rogers suspects his aunt had developed the disease much earlier than 52, and he thinks her life could have been saved if she had been screened at an early age.

His aunt’s death, along with seeing many instances of Black men getting prostate cancer and Black women getting breast cancer in his community and other family members getting chronic diseases early in life, ignited his interest in health disparities. In 2011, while pursuing a doctorate in health education at Texas A&M University, he attended a summer research program at the University of Michigan, where he worked on a project examining colorectal cancer health inequities.

“When I really got into the literature, first thing I saw is that we as Black men have the highest chance of getting colon cancer and dying from it compared to everybody,” said Rogers. According to the American Cancer Society, Black men are 24% more likely to develop the disease and 47% more likely to die from it than white men. Black women are 19% more likely than their white counterparts to develop it and have a 34% higher rate of dying from it.

The next thing he noticed was that the American College of Gastroenterology had made recommendations in 2005 and in 2008 to lower the screening age for Black people from 50 to 45 because of their increased risk. Despite those guidelines, it wasn’t until this year that the influential recommendations of the United States Preventive Services Task Force were changed to urge Americans of any race and ethnicity to start getting screened at age 45.

In making its decision, the task force cited the rise of early-onset colorectal cancer, saying the incidence of the disease in adults between the ages of 40 and 49 had increased by nearly 15% from the years 2000-2002 to 2014-2016. People under 50 now account for 1 out of every 10 new colorectal cancer cases.

The USPSTF guidelines are particularly important because the Affordable Care Act requires insurers to cover preventive care it recommends, including cancer screening, with no out-of-pocket costs for patients.

The task force noted it was especially concerned about rising cases among Black Americans, which it said was partly due to this group having less access to quality screening and being less likely to get tested, rather than genetic differences. Data from the 2010 National Health Interview Survey found that 55.6% of Black people had been screened for colorectal cancer within the recommended time interval compared with 59.2% of white people.

Much of Rogers’ community-driven research in the last decade has looked at reasons Black men don’t get screened, or seek care for colorectal cancer when possible symptoms first appear. Some of those barriers include a lack of knowledge about these symptoms — such as abdominal pain, change in stool size or shape, and blood in the stool — a lack of social support in seeking screening, not knowing their family history, and having a low income or being uninsured.

He has also focused on how notions of masculinity can lead some Black men to tough out symptoms instead of seeking medical help or feel that making a doctor’s visit might mean missing out on work, which could jeopardize their ability to provide for their family. For some, having a scope placed in their rectum feels like a violation of their masculinity or sexuality.

“Toughness — which basically means you’re not going to be an advocate for yourself in terms of your emotional state, your physical state — has a deleterious effect on your health,” said Justin X. Moore, a cancer epidemiologist from Augusta University in Georgia who collaborated with Rogers on the hot spot study. “Masculinity in itself definitely plays a role, I think, in delayed care.”

Deep-rooted mistrust of the medical establishment is another factor. Rogers recalled one interaction he had while conducting a focus group with Black men at a barbershop in Ohio. One man spoke about his concerns with Cologuard, a noninvasive, at-home colon cancer screening test that involves mailing a fecal sample to a lab.

“He said, ‘You know, that little box that be on TV and talking to people? … I don’t trust it. I don’t know what they’re gonna do with my poop. If they take my poop, I want them to send it back,’” Rogers recalled the man saying. “And so we chuckled, but I was like, that is deep.”

Such distrust, rooted in generations of discrimination, is hard to shift, but in his talks, Rogers urges patients and their families to be their own advocates. At a PBS Utah town hall on colorectal cancer in the Black community in March, he stressed the importance of patients making sure they find providers who will listen to them and not dismiss their concerns. “Being your biggest advocate is key,” Rogers said. “Regardless of the fight you may have, you still need to push forward and do what’s best for you and your health and your family.”

The consequences of not doing so are all too real, for him. He tells a story about working at the Minnesota State Fair in 2014. He and his colleagues had set up a giant pink inflatable colon for people to walk through and learn about colorectal cancer. One young Black man in his early 20s came up to Rogers to take a survey and chat.

“He pulled his shirt up and he showed me his ostomy bag,” Rogers said. The young man, who had no family history of the disease, had been diagnosed with stage 4 colon cancer. “I thought, this is another prime example of why I have to continue to keep doing this.”

Carter started the first of four rounds of chemotherapy on Oct. 4, 2019, about a week after being diagnosed. Each day of his treatment he had to swallow nearly 20 pills.

Later that month, high schools from across Jackson came together to put on a basketball benefit for him. Carter watched as players from more than a dozen teams scrimmaged in his honor. Fighting back tears, he shared his appreciation with a local news station: “I’m used to helping other people, not being the one that needs help.”

Above all, he was appreciative of his wife. Carter was lucky he had J’Haun, who had long worked in health care, including as an emergency room technician and as an intake coordinator. She understood the importance of a patient having an advocate to help them navigate their care. She had seen patients rushed out of hospitals before they were fully ready. She had also seen, as she described it, doctors and other health care workers who were disillusioned with patients and would dismiss their pain as exaggerations or histrionics.

Around mid-November, Carter’s knee started to hurt again. He could barely stand on it or straighten it, but he kept coaching. He would sit on the sidelines, often bundled up because the chemo had made him sensitive to cold, and instruct his players through drills and layups.

As taxing as everything was on his body, his sense of humor never waned, like when he would ask a player to do 500 toe raises. Partway through, he’d doze off and when he awoke he’d say: “I think you only did like 200. Start over.”

The knee pain became unbearable, and in late December he got an MRI: The cancer had spread to his knee. Carter underwent surgery to replace the knee and part of his femur, but while he was recovering, he started to get migraines that made him vomit.

J’Haun spent all of January at his bedside and slept and showered at the hospital every day. They would play card games like Uno to pass the time. Through every procedure she held his hand. She said she was concerned with not just Carter’s health but also his ability to advocate for himself.

She made sure she was there every morning when the doctors made their rounds. She wanted to be sure he understood exactly what the physicians were saying and what paperwork he might be signing. All the while Carter still suffered from migraines.

“The day that we were supposed to be getting discharged, I finally just put my foot down and I told them, ‘Listen, we’re gonna have to have that CT before we leave here,’” J’Haun said. “When they did the CT, they found out that the cancer had spread to his brain.”

The doctors performed an emergency surgery to remove spinal fluid building up in his brain and then another operation to remove a massive tumor at the back of his head, followed by 15 rounds of whole-brain radiation to treat multiple smaller tumors.

In early March, Carter was sitting in a wheelchair at the hospital’s oncology radiation department. He had wrappings on his knee. In his hand was a big red sign that read “My Last Radiation.” Carter rang a bell on the wall to celebrate while the medical staff and his loved ones clapped and cheered. He had lost his hair, a lot of weight, and much of his mobility. But he still had his beaming smile, which he shared with everyone in the room.

Ayear earlier, in March of 2019, Rogers joined numerous other colorectal cancer advocates with a group called Fight Colorectal Cancer in Washington, D.C., to increase awareness of the disease among members of Congress. During a training session on how to speak with lawmakers, as the 150 or so people shared stories about why they were there, he heard a common theme.

“It was like 90% of the people lost loved ones at an early age from CRC,” Rogers said. “It wrecked me and it ignited me to advocate the next few days in the Capitol.”

The event spurred him to further investigate where across the country people were developing early-onset disease. Rogers connected with Moore, the cancer epidemiologist from Augusta University, who had done previous work mapping hot spots showing counties where women were more likely to die from breast cancer in the U.S.

To construct their hot spot map, they analyzed about 20 years of mortality data from the Centers for Disease Control and Prevention at the county level. They then linked the hot spots they made from that data with a National Cancer Institute database of nearly 32,500 men between 15 and 49 who had been diagnosed with colorectal cancer between 1999-2016. (Residents from Hawaii and Alaska were excluded.)

The researchers identified 232 counties that were hot spots — the top about 7.5% of counties ranked by the rate of men dying of early-onset colorectal cancer. Men diagnosed with early-onset colorectal cancer in these locations had up to a 24% higher risk of dying from the disease than those living elsewhere. When the data were adjusted for differences in smoking rates, the risk to those living in the hot spots was 12% higher. Compared with white men living in the hot spots, Black men had a 31% higher risk of dying from colorectal cancer.

The hot spot counties were concentrated in the South — 92% — and 8% were in the Midwest. Many of the hot spots were clustered along the lower Mississippi Delta, in Appalachia, South Carolina, and along the Virginia-North Carolina border.

Men living in the hot spots were more likely to be Black than those living in counties that were not hot spots, about 31% compared with 13%. They were also more likely to be diagnosed at stage 4 and on average survived about a year less. White men living in the hot spots had much worse survival rates compared with white men living elsewhere.

Rogers’ map doesn’t tell him what causes the hot spots, or why Black people living there are more likely to develop colorectal cancer and die from it. He did find that there were a lot of smokers in the hot spots. About 24% of the adults in those counties smoked compared with 14% of U.S. adults overall. Those living in the hot spots also had less access to healthy food and higher rates of obesity and physical inactivity, and were more likely to be uninsured, low-income, and not college-educated than those outside of the hot spots. The hot spots were also more rural and had fewer primary care physicians.

Darrell Gray II, a gastroenterologist at The Ohio State University Wexner Medical Center who was not involved in the research, said the study highlights where scientists, clinicians, and community activists can dedicate resources and invest in breaking down the barriers.

“We’re able to see in this map where we can have a significant impact on the burden of early-onset colorectal cancer,” said Gray.

The researchers also published a hot spots paper that looked at early-onset colorectal deaths in women. That work was led by Andreana Holowatyj, an assistant professor of medicine and cancer biology at Vanderbilt University Medical Center. They found fewer hot spots near central Appalachia than in the men’s hot spot paper, but also more hot spots in northern Appalachia near Pennsylvania and New York.

The studies do not demonstrate causality. “We can’t say … what causes the higher burden of colorectal cancer in these hot spot areas or the higher burden of colorectal cancer amongst men or the disproportionate burden amongst non-Hispanic Black men either,” Gray said.

Moore agreed. “We don’t know if it’s something in the water. We don’t know if it’s something with diet. We don’t know if it’s something with access, it may be all three of those,” he said, “But we need to bring awareness about it.”

The hot spots they found, he said, also correspond with hot spots that have been identified for other diseases, like breast cancer, lung cancer, sepsis, even Covid.

“We’re seeing these communities be disproportionately affected by a lot of different diseases,” he said, “which basically means that, in terms of the social determinants of health, I think that there’s a lot that’s going on there in terms of barriers for sure.”

Mid-March of 2020 brought unimaginable challenges as the Covid-19 pandemic roared across the country. All of Carter’s visits were suddenly changed to telehealth appointments, and J’Haun found it more difficult to advocate for him even as he continued to bleed heavily from his rectum.

She grew so concerned by the amount of blood he was passing, and frustrated that she couldn’t get the attention of her husband’s caregivers, that she took a bedside commode pail that Carter had been using into the bathroom and recorded it on her phone.

“No one wants to shoot a video of a bucket full of blood,” she said. But she felt it was the only way to ensure the doctors would understand how bad his condition was getting. She emailed the clip to one of Carter’s physicians, who said he needed to be taken to the hospital immediately.

In the emergency room, she said, “It wasn’t until I actually showed them the videos that they knew how bad he was bleeding, and that they believed how bad he was.”

The bleeding was caused by a tear in the tumor in Carter’s colon. He was admitted to the oncology unit, and unlike in January, J’Haun couldn’t stay because of Covid restrictions on visitors. After she left, she received a phone call from the hospital: Carter had developed a fever and they were moving him to the Covid-19 unit as a precaution. He had to wait two days to get the result of his Covid test before anything could be done about the bleeding tumor in his colon, J’Haun said.

“You’re essentially denying somebody what could be lifesaving measures just to wait on a Covid result,” she said. His test came back negative. But because Carter was no longer bleeding from the rectum, the doctors decided not to do the procedure, J’Haun said.

Carter returned home, but was rushed back to the hospital by ambulance a few days later after suffering a seizure. A CT scan revealed more tumors in his brain. The doctors began having end-of-life conversations with Carter. He told them he just wanted to go home to be with his family and at that moment, it was all in God’s hands.

One day in early April, he heard honking horns and a commotion outside and rolled his wheelchair to the front of the house. To his surprise, dozens of players, neighbors, and other community members had organized a drive-by parade. They held signs out their car windows and had taped messages to their doors wishing him well. Carter waved at the community he had given so much to.

“It really felt special to him to be poured back into the way that he had poured into people,” said J’Haun.

As he grew weaker, he still managed to supervise drills with players who came by his house.

“He had the boys down in his driveway working on ball handling and stuff. He was coaching in his wheelchair, on his dying days he was still in it,” said Hodge, who had watched his mentor’s final days through social media posts J’Haun had shared. “He loved what he did and he loved kids. It was a testament to him and the type of person he was,” he said.

Around 1 p.m. on May 13, Carter passed away. There was an outpouring of love on Twitter from past players, other coaches, and community members who felt they owed so much of their success to their coach and dear friend.

“A great person that was willing to help others succeed! He helped so many kids from Mississippi through the game of basketball,” wrote Alvin Brooks III, an assistant coach at Baylor University.

“He taught me how to handle adversity and be a tougher player. I will never forget my summer playing under him,” said Garrison Wade, who plays for Dartmouth College.

They held a funeral service as best they could in accordance with Covid guidelines. His players lined the streets outside the funeral home. J’Haun thought about how she would miss the lullaby of his heartbeat.

Afew months after her husband’s passing, J’Haun was in her therapist’s office discussing the buzz around the “Black Panther” sequel. Carter loved the first film and was a Marvel and DC Comics fanatic. He collected the comics, watched all the old cartoons, and knew nearly every superhero’s backstory.

He had turned J’Haun into a fan as well, and watching the wondrous first movie was something special they shared. Without him, who was going to tell her whether they got the story right, or what they changed from the comics? She didn’t know if she could see the sequel without him.

Later that same week, Chadwick Boseman died. “Finding out that he had passed of colon cancer was a blow,” said J’Haun. “All I saw in my mind was him going through the same things that Omhar went through, and how awful that was for him and his family and his wife to experience.”

She took to Facebook to share her grief and condolences: “Heaven has our heroes.”

Boseman’s passing struck Rogers hard too. Within a minute of the news breaking, he was flooded with texts and messages over social media. “People were like, ‘Oh this is real. This could happen to me,’” Rogers said.

It brought a tsunami of attention to early-onset colorectal cancer in a way Rogers had never seen before. He spoke to local news stations and took part in virtual town halls. “People were more so reaching out to me saying, ‘Can you tell us more about it?’”

Boseman’s death had a profound effect on Moore, too, especially after he saw that the actor had lived in one of the hot spots they had identified. “We know that face,” said Moore. “But there are thousands and thousands of faces that are being lost before the age of 50, which is just crazy to think about.”

Among those faces was Carter. In his final days, he was still giving to the community, telling some of the same young men he taught to play ball that they should learn about the risks and symptoms of colorectal cancer. For Hodge, that’s another lesson from his coach that’ll stick.

“This puts in my mind, for this to be a hot spot and for that to happen to somebody close to me, that I need to get educated on it, number one,” said Hodge. “And number two, I need to get checked out myself, whatever the recommended time I should get it.”

This story was reported while Nicholas St. Fleur was a Knight-Wallace Reporting Fellow at STAT. With a family history of colorectal cancer, he decided to get a colonoscopy as he turned 30 — and document the journey on video. Watch his story here.