Rising Rates of Colon Cancer in Young People
Heather’s death is part of a concerning trend: More young adults are being diagnosed with this type of cancer, and more are dying from it.
While colorectal cancer death rates overall were cut in half between 1970 and 2016, the American Cancer Society (ACS) says there has been a 51% increase in colorectal cancer among those under age 50 since 1994. New cases of colorectal cancer in adults under 55 have increased almost 2% every year since the mid-1990s, and death rates in this age group are also rising, even though colonoscopies are more common.
Cracking the Mystery
While researchers can clearly see a rise in colorectal cancer diagnoses and mortality rates in young people, they don’t know what’s driving it.
“It bothers me on a daily basis,” Siegel says.
Knowing your family history is important. The general population has about a 4% lifetime risk of getting colorectal cancer. That can rise to 80% for people with the inherited Lynch syndrome and 100% for familial adenomatous polyposis or FAP, both genetic mutations.
Eduardo Vilar-Sanchez, MD, PhD, an associate professor in the Department of Clinical Cancer Prevention at the University of Texas MD Anderson Cancer Center in Houston, did a study on his own hospital’s population that found one-third of colorectal cancers diagnosed before the age 35 are hereditary.
“For a third of the patients, we should be referring all these people for genetic counseling,” he says.
But family history alone doesn’t explain the diagnosis for all patients. Allison Rosen was 32 when she was diagnosed with colon cancer. The Houston resident says while the inflammatory bowel disease known as Crohn’s disease does run in her family, colon cancer does not.
The Power of Prevention
A survey released in early 2019 by the Colorectal Cancer Alliance found 67% of young-onset colorectal cancer patients saw at least two doctors and as many as four before being diagnosed, leading to late stage III or IV diagnoses for 71% of those surveyed. Patients were often slow to recognize their own symptoms, too. Sixty-three percent of respondents had waited 3-12 months to see a doctor because they didn’t recognize their symptoms as signs of colorectal cancer.
- Blood in the stool
- Bleeding from the rectum
- Abdominal cramping
Young patients may also see changes in the shape of their stool, how often they go to the bathroom, and how difficult it is to have bowel movements.
“We need to really talk about the symptoms,” Schnoll-Sussman says. “No matter how old you are, if you have these symptoms and they are persisting, go to your doctor and get it checked out. It probably isn’t cancer, but it could be,” she says.
Many mutations, or changes in genes, are also linked to a higher chance of having colorectal cancer, and people who have those changes do often get diagnosed at an early age.
- Sigmoidoscopies. These look at the rectum and part of the colon. If no polyps are found, these tests are generally repeated every 10 years.
- Stool tests that detect blood in fecal matter. Studies show they can lower the number of colorectal cancer deaths by 15% to 33% in people ages 50 to 80 when done every 1 to 2 years.
- Stool DNA test. Cologuard is the only FDA-approved test. This is a new test, so the benefits and harms are less well-known than for other tests.
If a tumor is found, advocacy groups recommend that all colorectal cancer patients get their tumor tested. Tumors can be classified as MSS (microsatellite stable) or MSI (microsatellite instable). The latter only applies in about 15% of colorectal cancer tumors, but those patients may be candidates for immunotherapy, says Rajarsi Mandal, MD, an assistant professor at Johns Hopkins Medicine in Baltimore who has studied the treatment.
Vilar-Sanchez says colorectal cancer in young people tends to be more aggressive and may need to be managed and treated differently than it is in patients over 50. He says his hospital started making this shift in treatment about 4 years ago.
“The expertise of a multidisciplinary team is needed, including genetic counselors, geneticists, fertility doctors, and psychological support, because being diagnosed at that age is a shock,” he says. “The best message we can get out there is young patients have their own issues, and it’s very important to recognize those.”
Now that Rosen’s aggressive treatment is over, the 39-year-old says she is adjusting to her new normal with an ileostomy bag. She says she is proving to herself and others that it doesn’t have to limit her. “I go on international trips. I have gone skiing, skydiving, surfing. I’ve done everything I would do before cancer — maybe even more,” she says.
The onetime researcher has also changed her career and now works in cancer prevention. “As a result of everything I went through, I want to be out in the community talking about this,” Rosen says. “I want people to realize that this isn’t just an old man’s disease anymore. I think if you have a colon, you are at risk. No matter your age, you have to be your own advocate. So if you think something is wrong, speak up. Find a doctor who will listen to you, and get you the screening you need.”
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