But his death, say experts, highlights two key issues in oncology that warrant loud and frequent discussion: data that shows that the risk of developing the disease earlier in life is increasing, and racial disparities in colorectal cancer incidence and deaths, with Black Americans being the most vulnerable. RELATED: Colorectal Cancer Screening: Family History Key to Determining Age to Start “I’ve been in oncology for 40 years now,” says Dr. Schilsky. “It was pretty unusual to see a young person with colon cancer, with the exception of someone with inflammatory bowel disease, ulcerative colitis, Crohn’s disease or someone who came from a family with a predisposition to cancer.” Gradually, he says, the patient population has changed. Since the mid-1980s, colon cancer rates have increased by about 1 to 2 percent per year in adults ages 20 to 39, and by about 0.5 to 1 percent per year in adults ages 40 to 54, according to a study published in February 2017 in the Journal of the National Cancer Institute. Rectal cancer rates are increasing even faster in people under age 50, according to the study, rising about 3 percent per year from 1974 to 2013 in adults under age 40. The reason for the uptick is unclear, says Paul Oberstein, MD, assistant professor of medicine and director of gastrointestinal medical oncology at NYU Langone’s Perlmutter Cancer Center in New York City. Major risk factors for colorectal cancer include obesity, sedentary lifestyle, certain types of diet (such as those high in red meat), smoking, heavy alcohol use, a history of colorectal polyps, and certain genetic mutations. “We know the types of cancers that are increasing — on the left side of the colon, the rectum, and at the end of the colon,” says Dr. Oberstein. “Those tumors are more associated with dietary changes. We know there is a connection, but it’s not fair to say there is a direct line between this behavior and this type of cancer.” Younger colorectal cancer patients are also more likely to be diagnosed at a more advanced stage, he says, which contributes to higher death rates in that age group. “Younger patients are not expecting the possibility of cancer and may dismiss the symptoms,” Oberstein says. “We need education to make sure people understand this is real — colon cancer happens to young adults. If someone has signs, if they are worried about pain, changes in bowel habits, and blood in the stool, they should seek medical guidance.” Physicians, too, need to more seriously consider the potential for cancer in younger people with bowel, complaints, Schilsky says. For many doctors, he says, colorectal cancer is still not top of mind when they see a younger person complaining of bowel-related symptoms. RELATED: Never Too Young: A 30-Something Battles Hereditary Colon Cancer
Black Americans Fare Worse, Tuskegee’s Legacy of Distrust
Black Americans have the highest colorectal cancer rates among all racial groups in the United States, according to the American Cancer Society. In fact, research presented in Septemer 2019 at the 12th AACR Conference on The Science of Cancer Health Disparities in Racial-Ethnic Minorities and the Medically Underserved found Black Americans have a 43 percent higher colorectal cancer death rate compared with whites. This equates to 2,252 excess deaths of Black Americans from colorectal cancer each year, said the study’s lead author, Abigail Silva, PhD, MPH, assistant professor in the Parkinson School of Health Sciences and Public Health at Loyola University in Chicago. There is no known biologic or genetic reason why Black Americans have higher rates, Schilsky says. “The general explanation why minority populations have a higher incidence or worse outcomes relates to access to care more than anything else,” he says. Some Black Americans may be unaware they have a higher risk of some types of cancers, says Bin McLaurin, a patient service representative at Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute in Los Angeles. McLaurin was diagnosed with prostate cancer at age 46 in 2014 and has since worked to raise awareness about preventive healthcare and cancer screenings in Black neighborhoods in Los Angeles. McLaurin says there is lingering distrust of medical care among some Black Americans that reaches back to the 40-year Tuskegee Study that began in 1932 in which Black men in Alabama were observed but went untreated for syphilis. “There may have been a distrust and therefore people don’t participate in screenings. You didn’t know if the healthcare system had your best interests at heart,” McLaurin says. “I was part of that belief. I was 46 years old, and I really had not embraced the importance of going to the doctor each year to get a full physical.” RELATED: #BlackHealthFacts MATTER
Raising Awareness in Black American Communities
When McLaurin decided to have a checkup, doctors found an enlarged prostate, which eventually led to a diagnosis of prostate cancer. He underwent treatment and has recovered. But the experience left him determined to increase awareness regarding cancer risk among Black Americans. He regularly speaks to community groups, churches and at health fairs, often with physicians who also donate their time. “Those stigmas are being broken down with different people going into the community and sharing the benefits of early detection and getting screening,” McLaurin says. “Nobody wants to die of something that can be prevented. I think if we have ambassadors or liaisons that embrace the African American community, the more benefit we’ll see.” Boseman’s death may raise awareness, he says. “It’s heartbreaking,” McLaurin said of the actor’s death. “I’ve been tearing up since I heard about it. I hope it will be a wake-up call to our community that cancer doesn’t discriminate. It can happen to anyone. That’s why I do the health advocacy I do, especially working with men, to help them become aware that’s okay to take care of your health.” A statement issued last week by Michael Sapienza, CEO of the Colorectal Cancer Alliance, focused on stigma as a barrier to raising awareness about colorectal cancer deaths. Boseman, he noted, kept his four-year battle with the disease private. “Colorectal cancer awareness is hampered by an intense stigma, particularly in the Black community,” Sapienza said in his statement. “Cancer is a personal battle, and we respect Boseman’s choice to shield the public from his diagnosis. The Alliance, however, encourages open conversations about this disease. Even superheroes can develop colorectal cancer.”
When to Screen for Colorectal Cancer
Early detection is critical to outcomes in colorectal cancer, according to the American Cancer Society. When the colon cancer is detected before it has spread, 90 percent of patients survive at least five years. However, the five-year survival rate is only 14 percent when the disease is detected after it has spread elsewhere in the body. “Detecting the colon cancer early is always going to be more curable,” Schilsky says. “If you detect it before it penetrates through the full extent of the bowel wall and to the lymph nodes, the cure rates are in excess of 80 percent with just surgery.” Colorectal cancer screening is recommended for everyone beginning at age 45 or 50. However, a study published in April 2016 in the Journal of Gastrointestinal Oncology found disparities in the rate of screening. In the study, which looked at adults age 50 and older, the lowest colorectal cancer screening rates occurred in Hispanics (47 percent) followed by Black Americans (56 percent). The screening rate in non-Hispanic white Americans was 62 percent. Screening is important because the disease sometimes causes no symptoms in early stages. Some of the symptoms of the disease include diarrhea, constipation, cramping, abdominal pain, blood in the stool or rectal bleeding, weakness, fatigue, and unintended weight loss. The increase in colorectal cancer incidence in younger adults has triggered a debate in recent years over the age to begin screening for adults considered at average risk for the disease and who have no symptoms. Both the Centers for Disease Control and Prevention (CDC) and U.S. Preventive Services Task Force (USPSTF) recommend colorectal cancer screening starting at age 50 for average-risk people and continuing until age 75. (The USPSTF is currently reviewing its recommendations, according to the organization.) However, the American Cancer Society recommends colorectal cancer screening for people at average risk begin at age 45 and continuing until age 75. Their guidelines say that screening can be done with a stool-based test or an exam-based test. The issue of when to start screening is difficult because while the incidence of colorectal cancer in people under 50 is rising, the numbers are still low compared with the incidence in people over 50, Oberstein said. Moreover, there are downsides and costs associated with colorectal cancer screening. It may be more helpful, he says, to focus on individual patient risk when deciding when to start to screening, including screening Black Americans beginning at age 45. “There is a discussion as to whether Black Americans should be considered average risk,” he says. “That is a question that has not been clearly determined. There is no question that Black Americans have increased incidence and increased mortality from colon cancer and increased risk of young-onset disease. That highlights the importance of an individual having a relationship with a physician or healthcare provider who understands them.” Screening should also be based on family history, Schilsky notes. “It’s very important to know if there has been any kind of cancer in your family,” he says. “At what age was that cancer diagnosed? As soon as you have a family history, you are in a higher risk group than someone who doesn’t have a family history.”
