June 7, 2019 -- When 34-year-old Heather Blackburn-Beel first had stomach pain, the Indiana resident, mother of two, and full-time nurse figured it was irritable bowel syndrome combined with her busy and stressful schedule.
But her mother, Kaye Blackburn, wasn’t convinced. Colon cancer runs in the family and had claimed the lives of many relatives, including Kaye’s older brother at age 32. She didn’t want Heather to take any chances.
Kaye says she begged her daughter to get a colonoscopy, even offering to pay for it. But Heather didn’t feel that she had the time or that anyone needed to spend money on it. When the pain worsened, Heather relented. The result: She had stage IV colon cancer. Doctors removed her colon, and she began chemotherapy, but the cancer had spread to other parts of her body.
“I think her biggest concern was for her children. She wanted to live to see them. Her goal was to see them through high school,” Kaye says. “But that didn’t happen.”
Heather died on May 23, 2014, 4 1/2 years after her diagnosis. She is survived by a large family that includes her husband, two teenage children, mother, father, and two sisters. They gathered this year on the 5th anniversary of her death and say they still miss her every day.
“I think it’s probably the worst loss that anyone can have. I don’t think there is anything that prepares you. It’s not natural,” Kaye says. “You never get over losing a child. You just never do.”
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.
“More than 16,000 people younger than 50 are currently diagnosed with colorectal cancer each year. There are 45 new cases each day and 3,600 -- 10 per day -- die from the disease,” says Rebecca L. Siegel, the American Cancer Society’s scientific director of surveillance research.
Because being tested is key to prevention, the American Cancer Society released updated screening guidelines in 2018. The new guidelines say that adults at average risk should first be tested at age 45 -- 5 years younger than the previous recommendations.
The American College of Gastroenterology had already said that African-Americans should start routine screening at age 45 because they have higher odds of getting colorectal cancer than white people. In addition, anyone with a first-degree relative -- meaning a parent, sibling, or child -- diagnosed before age 60 or two first-degree relatives diagnosed at any age are supposed to be tested at age 40, or 10 years before the age of diagnosis of the youngest relative who had the disease.
A 2017 study by ACS researchers found that adults born around 1990 have twice the risk of colon cancer and 4 times the risk of rectal cancer, compared with those born around 1950, who have the lowest risk.
New data published in 2019 show early-onset colorectal cancer -- before the age of 50 -- is rising fastest in 10 states, six of which are in the Western U.S., but overall rates are highest in the South. Investigators at the ACS and Ohio State University found rates rose faster for rectal tumors (1.7% per year) than for colon tumors (0.7% per year), and the increase was mostly seen in people who are white.
“This finding suggests that early life exposures, in addition to the ‘usual suspects,’ may be contributing to the rise in early-onset disease,” says Siegel.
This isn’t just a U.S. phenomenon. The incidence of colon cancer is rising in several other high-income countries too. A study published in May found that during the 10-year period up until 2014, the incidence of colon cancer in people up to 49 years old rose significantly each year in Denmark (by 3.1%), New Zealand (2.9%), Australia (2.9%), and the U.K. (1.8%). Researchers also found significant increases in the annual incidence of rectal cancer in this age group in Canada (by 3.4%), Australia (2.6%), and the U.K. (1.4%).
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.
Rosen’s cancer was found after she started to have uncomfortable bowel symptoms. It was very advanced, even though she’d had a clean colonoscopy just a year and a half earlier. “It was to the point that if I had waited much longer, I’ve been told it was about to break though my colon wall,” she says.
Rosen’s treatment included radiation, chemotherapy, and surgery to remove her entire colon. Today she has a permanent ileostomy -- an opening in her stomach that connects to an external pouch so her body can get rid of bowel waste.
“It’s a part of me now,” she says. “If medical devices like this didn’t exist, I wouldn’t be alive. I’m proud of it and proud of my body.”
Researchers are looking at a wide range of possible causes for the rise in cases in young adults like Rosen. Lack of exercise, diets high in red meat, physical inactivity, smoking, and alcohol can make colon cancer more likely at all ages, and obesity is a possible trigger, too. But these things aren’t in play for many younger patients.
Siegel, the American Cancer Society researcher, says she thinks there could be a connection to the body's microbiome -- the bacteria that build up in our gut and are influenced by a wide variety of things in our diet and environment. She says her recent study about rising rates in Western states -- where obesity rates are lower -- also shows that something more is at play.
“The increase in colorectal cancer is confined to non-Hispanic whites in most states, which is inconsistent with the rise in obesity, which has affected all racial and ethnic groups,” Siegel explains. “And two, the rise in early-onset colorectal cancer is most rapid in Western states and does not appear to be directly correlated with historic changes in obesity in young adults.”
Researchers say other clues are starting to emerge. Cases are most commonly found on the left side of the colon or in the rectum. Some studies show that younger people have more aggressive cancer with worse prognoses. The disease is generally more advanced -- stage III or IV -- in younger people too, perhaps a reflection of the challenge in getting diagnosed when you're younger than 50.
“Money needs to be put into this research because there are undoubtedly genes we have not found. … The answers are out there. We just don’t know them yet,” says Felice H. Schnoll-Sussman, MD, director of the Jay Monahan Center for Gastrointestinal Health at New York-Presbyterian Hospital/Weill Cornell Medicine in New York City. The center is named after broadcaster Katie Couric’s late husband, who died of colon cancer at age 42.
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.
This is consistent with another recent study that found it took 217 days after they first had symptoms for someone under the age of 50 to get treatment for rectal cancer. That compared with just 30 days for people over 50.
Doctors say the most common symptoms of colorectal cancer in young patients are:
- 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.
Blackburn-Beel’s family is one of many who didn’t know Lynch syndrome ran in their family until Heather’s doctor recommended genetic testing and found she had it. People with Lynch syndrome have a higher risk of certain kinds of cancers. Now, the family understands why so many aunts, uncles, and cousins through the years have been diagnosed with, and died from, colon and stomach cancers.
Since Heather’s diagnosis, surviving family members have gotten serious about regular colonoscopies long before the recommended age of 50. Her children, now 19 and 16, will start getting them annually when they are 21. “If something happens, they’re going to know about it and be able to get ahead of it,” Kaye says.
Colonoscopies are generally the preferred way to get screened, and studies show they cut the odds of death by more than 50%. They look at the rectum and entire colon.
Other approved methods include:
- 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.”