Working at an outpatient clinic in Los Angeles, Riley educated patients on the importance of cancer screenings, breast self-examinations, and exercise to prevent cancer. Yet, despite her own doctor’s urging, her fear of what might go wrong during anesthesia kept her from getting her colorectal cancer screening. “I was afraid of not being in control,” Riley says. “It was a fear of being put to sleep and not knowing what was going on.” The first time a doctor brought up colorectal screening to Riley, she was 35. “I wasn’t considered high risk, but my doctor at the time told me that the recommendations for screening were based on tests done in white men, and not people like me, a Black woman, so we likely needed to be screened earlier,” Riley says. Despite her doctor’s recommendation of an early screening, Riley waited. She waited again after she turned 50 in 2016, even though at the time 50 was the recommended age to begin colonoscopy screening. Updated guidelines from the American College of Gastroenterology issued in 2021 changed the age to 45. At 54, Riley reached a turning point. “My doctor took the time to talk to me about the science and the data and exactly what happens during the procedure and how safe it is,” Riley says. “I felt more comfortable, and even though I was still afraid, I knew I needed to go through with it. I trusted my doctors.” The procedure went well and was nowhere near what she feared. “It was actually a piece of cake,” she says. “The nurse held my hand and said, ‘Let’s talk about something pleasant.’ The next thing I knew, I woke up.” But Riley soon learned some distressing news. During the procedure, her doctor had removed a cancerous polyp. She says if she could go back in time, she would have gotten screened much sooner. “I could have full-blown cancer right now,” she says. “Around that same time, Chadwick Boseman died [of colon cancer], and he was much younger than me.” Six months later, Riley went in for another screening. She was not afraid this time, and doctors found no signs of cancer. Her next screening will be in five years.
Disparities the Black Community Faces in Colorectal Cancer Cases and Deaths
Riley’s experience is not an uncommon one, especially in the Black community. Black Americans have a 20 percent higher incidence of colorectal cancer than white Americans and are 40 percent more likely to die of it, according to the American Cancer Society. The reasons behind these disparities are varied and complex, but the hesitation and fear of colorectal cancer screening among Black Americans is common. “We unfortunately have a long history of exploitation of minority populations in the United States, whether you’re talking about African Americans, American Indians, or the Latino population,” says Folasade May, MD, PhD, a gastroenterologist and colon cancer prevention researcher at UCLA Health. “And the problem is that that history has left a discomfort among many of the individuals in these communities about seeking care.” One of Dr. May’s main areas of research focuses on barriers to colorectal cancer screening among Black Americans and understanding this discomfort and mistrust. “When we do these studies and we try to understand why Black individuals have mistrust [in the healthcare system], they’re not going to say, ‘I don’t want to get screened because of Tuskegee,’” she says, referring to the infamous 20th century syphilis study that left Black people untreated for the disease. “Maybe that’s in their mind that it was a horrible, racist experiment, but that’s not really driving their healthcare decisions.” What’s driving minority healthcare decisions, she says, is the personal experiences they have when seeking care. “They’ll say things like, ‘The last time I went to my doctor and complained about back pain, he or she didn’t do anything, and I felt mistreated.’ That makes people less likely to seek care,” May says. “And because we have a problem with structural racism in the healthcare system, and who has access to the best care, and because we have implicit and explicit bias among physicians and how we care for patients, there are certain communities that just don’t feel the healthcare system is for them.” John Carethers, MD, the chair of the department of internal medicine at Michigan Medicine in Ann Arbor and an expert on colorectal cancer screening among Black communities, experienced this hesitation firsthand when he gave a talk to 150 Black men during a cancer information session at a local community event. Dr. Carethers, who is Black, said about a dozen of the attendees came up to speak with him one-on-one after his presentation. “All of them said they would get screened, but only if I was the one who did it,” he recalls. “So that just shows there’s definitely some fear and mistrust with the healthcare system at large.” May says that many Black men in particular have “extraordinary hesitancy” about colonoscopies. “In Black male studies, we’ve learned that there’s discomfort with even the idea of any instrumentation in the rectum or the anus,” she says. “Unfortunately, there’s a lot of misinformation about sexual acts and implications on your sexuality if you have this procedure done. There’s also general hesitancy about anyone potentially violating their body in this way while they’re asleep and sedated.” In addition to hesitation and fear about screening, other issues affect colorectal cancer rates and deaths in the Black community. Risk factors for colorectal cancer, such as a low-fiber diet, a diet high in meat and processed foods, and high alcohol and tobacco use, are more common in Black individuals. “It’s not that they’re at fault, but it’s the result of what we call social determinants of health, which are the result of policy, environment, and social structure that put some individuals at risk of disease, while protecting others,” she explains. Black Americans are more likely to live in “food deserts” where they don’t have access to fresh produce and other healthy food, May notes. They may also live in a physical environment where being out and exercising safely even during the day is not possible. “It’s all these social determinants of health that have led to lifestyle factors that have led to higher cancer rates in Black populations,” May says. While addressing all these barriers to care requires a multifactorial approach, including expanding healthcare coverage, improving the number of culturally sensitive providers in underserved communities, and better education on prevention and interventions, May says awareness plays an important role. “People like Jamie Foxx and a few other actors very recently have come out and said things like, ‘Colorectal cancer is killing people like us, and you need to get screened.’ I think that can be very effective,” she says.
Who Should Get Screened for Colorectal Cancer?
As mentioned, the latest guidance from the American College of Gastroenterology is that screening for colorectal cancer should begin at age 45. Adults age 76 to 85 should talk to their doctor about the necessity of screening. Before the update, it was recommended that people begin screening at age 50. Recent trends seen in colorectal cancer cases among younger people spurred the updated guidance. Overall, colorectal cancer cases have been declining in recent decades. Incidence rates dropped by about 1 percent each year from 2013 to 2017, according to the American Cancer Society. That downward trend is mainly seen in older adults. Rates are actually on the rise in younger age groups. “We’re seeing more and more individuals in their thirties and forties getting this disease without expecting it because it’s traditionally been associated with older people,” May says. “And they’re potentially getting symptoms and ignoring them and are dying from this disease completely unnecessarily because it’s so largely preventable.” One of the best ways to prevent colorectal cancer is to get screened, as this allows doctors to catch early signs when it is most treatable. “Colon cancer is agnostic as to race or ethnic background,” Carethers says, “and we know certain populations are at higher risk, largely because of their lifestyle. Screening can mitigate that risk.” For her part, Riley encourages others to get screened when it is their time. “My biggest piece of advice is to be proactive,” she says. “Talk to your doctor about it and ask a lot of questions. It’s important to take charge of your own health.”
