by Tim Henderson, Stateline.org

Credit: Francisco Farias Jr/public domain

Responding to new research on the rising incidence of colorectal cancer among younger adults, some states are trying to boost public awareness of the deadly disease with a focus on Black and rural residents.

In 2021, the U.S. Preventive Services Task Force changed the routine screening age for colorectal cancer to 45 from 50, based on growing cases among younger adults. But many people even younger are finding themselves with life-threatening advanced cancer that could have been prevented with earlier detection. It's unclear why new generations are increasingly susceptible.

Black and rural Americans are more likely to die from colorectal cancer at any age because they're less likely to get screening in time to save their lives. Using state and federal money, health care groups in Colorado, Delaware, Michigan, Mississippi, North Carolina, Texas, Washington state and West Virginia have had some success in boosting screening rates.

In Michigan, for example, health care groups last year surveyed Detroit-area Black residents 40 and over and found that many mistakenly thought they didn't need colorectal cancer screenings if they didn't have any symptoms. The groups increased the screening rate by giving more information to patients and rolling out software to automatically alert providers to schedule screenings.

West Virginia is considering a state version of a national program to raise more awareness among younger adults and their doctors, partly by bringing in trusted messengers in different communities to help spread the word, said Susan Eason, program director of the West Virginia Program to Increase Colorectal Cancer Screening. It's one of 35 state-level programs supported by federal, state and local money, she said.

"With this on the rise, younger people need to be aware of symptoms, and providers also need to be aware, so when a patient presents with something like blood in the stool, they don't dismiss it as hemorrhoids," Eason said.

Rural West Virginia residents face numerous barriers to screenings, including long distances on mountain roads to see doctors and a shortage of gastroenterologists and screening clinics that can mean a six- to nine-month wait for an appointment. In addition, many residents have jobs that don't allow paid time off for seeking medical help, Eason said. To help fill the gap, her program is increasing access to chemical tests that can be done at home and sent by mail, she said. However, an in-person colonoscopy is preferable because it can detect precancerous growths that doctors can remove.

Two authors of a December report that found that colorectal cancer is increasing with each generation told Stateline that lowering the age for recommended screenings is less important than making sure that people actually get them.

"Rather than lowering the age to initiate screening, I'd like to see us double down on our efforts to optimize screening participation," said Caitlin Murphy, an associate professor at the University of Texas Health Science Center at Houston.

More than 1 in 3 adults 45 or older has not been screened, according to the American Cancer Society.

The study's lead author, Samir Gupta, a gastroenterologist and professor at the University of San Diego, agreed.

Gupta said people under 45 should consider a colonoscopy if they have a family history or "red-flag symptoms" such as rectal bleeding, bloody stools, unexplained weight loss and low iron anemia.

Young survivors who spoke to Stateline said they initially ignored symptoms, or that the symptoms were misinterpreted by medical professionals who did not expect cancer in such young patients.

Jameelah Mahmoud, a nonprofit worker in Milwaukee, said she was misdiagnosed four times before a CT scan showed a massive tumor blocking her colon in 2019 at age 33, with stage 3 cancer that had spread to her lymph nodes. She had complained of increasingly sharp abdominal pain for months but was told only to avoid spicy foods and take antacids.

Now cancer-free after surgery and eight rounds of chemotherapy, Mahmoud, who is 37 and engaged to be married, said she tells people not to let doctors take their symptoms lightly.

"I always tell people, if you feel like someone's not listening to you, go somewhere else. Because you're precious. You only have one life," she said.

Rates of colorectal cancer deaths have been slowly decreasing for all ages since 1968, when they were around 28 per 100,000, to around 13 in 2023. However, deaths of patients 45 and younger as a share of colorectal cancer deaths have grown from 2.5% in 1976 to 3.8% in 2023, according to a Stateline analysis of federal mortality data kept by the federal Centers for Disease Control and Prevention.

From 2018 to early 2024, colorectal cancer death rates for all ages and for those under 45 have been highest in West Virginia and Mississippi, consistent with research showing that rural residents have a greater chance of dying from colorectal cancer. Kentucky, Oklahoma, Arkansas, Maine, Tennessee and Vermont also had high rates for all ages and for younger people. The lowest rates were in Connecticut, Massachusetts, Utah, Colorado and New York state.

Rural areas have the highest rates of colorectal cancer deaths, according to the Stateline analysis: Rates are 42% higher for the most rural areas compared with the most urban areas.

In his mid-20s and living in rural North Carolina without health insurance, Jacob "JJ" Singleton didn't think about cancer at all when he had painful bowel movements leading up to his 2015 diagnosis of stage 4 cancer that had spread to his liver and lungs.

"In my 20s, you know, I just thought I was invincible," Singleton said. "I told myself it was a pulled muscle because I was doing CrossFit training."

Eventually his parents prevailed on him to see a doctor when he could feel a pulsating mass in his abdomen that turned out to be a tumor.

Later, testing revealed that Singleton had a genetic disorder called Lynch syndrome that put him at especially high risk for fast-growing colorectal cancer, but he didn't know or suspect that at the time.

"There's not a lot of medical history in my family," Singleton said. "In my family guys don't go to the doctor much. You get through and don't complain. If you get sick you just hope it gets better. It's like it's God's will, is the way they think of it."

But even in big cities where residents have easier access to health care it's possible for early symptoms to get overlooked.

David Thau, a political fundraiser in Washington, D.C., was diagnosed at 34 in 2019 with a cancerous tumor that had broken through the walls of his colon.

"If there had been some kind of awareness campaign, some kind of posters in my doctor's office or other places where a 30-year-old could look and see, 'These are the symptoms of colon cancer,' I would have gotten this checked out much sooner," Thau said.

2024 States Newsroom. Distributed by Tribune Content Agency, LLC.