Colon cancer is rising in young Americans. It’s not clear why.
LOUISVILLE — The five people gathered around the restaurant table do not fit the profile of colon cancer patients. They’re female, and they’re young. Two were diagnosed in their 20s, one in her 30s, two in their early 40s.
Their colon cancer support group gathers about once a month to share stories, such as the one about the doctor who said you just need a laxative, the one about the oncologist who said there’s nothing we can do for you but give you chemotherapy the rest of your life, the one about friends saying, “You don’t look sick,” without realizing that isn’t helpful.
“It’s making themselves feel better,” said Carly Brown, 29, a schoolteacher diagnosed with Stage 4 colon cancer five years ago.
These women know all too painfully well that something strange is happening in the United States in the long war on cancer. Although progress has been substantial in lowering the overall death rate from cancer, deaths due to some types of cancer have increased among people younger than 50.
Colorectal cancer is one of the drivers of this trend. In the past three decades, incidence of the disease has risen significantly among people younger than 50, many of whom have no obvious risk factors, such as having a genetic predisposition. No one knows why.
American life expectancy trails that of similarly developed nations, and the gap is widening. The dismaying reality is that multiple factors are taking the lives of people who have not yet reached a ripe old age. Colorectal cancer is a tiny element in that complex story, but the recent rise in the disease among seemingly healthy young people is a reminder that the health landscape is constantly evolving in ways not readily understood by medical science.
A report released early this year by the American Cancer Society found that people younger than 55 went from accounting for 11 percent of all colorectal cancer in 1995 to 20 percent in 2019. About 3,750 people younger than 50 will die of colorectal cancer in 2023, according to the report.
The rise in early-onset colorectal cancer is driven primarily by cancer forming on the patient’s left side, in the lowest portion of the colon or the adjacent rectum, said Rebecca Siegel, senior scientific director of surveillance research for the American Cancer Society. These cases tend to be more advanced than cancers detected in older people.
Siegel first spotted statistical evidence of the phenomenon in early 2008 and wrote a report published in 2009. Further studies showed that, contrary to what some experts suspected, this is not just a case of increased screening and earlier diagnosis, Siegel said. Mortality rates have been increasing alongside disease incidence, she said.
“This is a dramatic increase. And the trends are not going away,” said Whitney Jones, a gastroenterologist who founded the Colon Cancer Prevention Project in Louisville and now is a consultant for Grail, the liquid biopsy company. “We need to educate all people around colorectal cancer, similar to how we educate women around breast cancer.”
Colorectal cancer remains a relatively uncommon disease among young people. But that creates a diagnostic hurdle: When a young woman, for example, tells a doctor that she’s experiencing severe pain in her lower abdomen, or blood in her stool, or unexplained weight loss, the doctor probably isn’t going to think “colon cancer.”
A common symptom among patients with colorectal cancer is rectal bleeding, and such patients are usually diagnosed with hemorrhoids, Siegel said. Doctors “are thinking horses, not zebras.”
A medical mystery
American life expectancy at birth, steadily rising during the 20th century and once seemingly destined to reach the milestone of 80, began stagnating around 2010. It peaked at 78.9 years in 2014. After a few down years, it edged back to 78.8 in 2019, then the pandemic hit. Life expectancy plunged to 76.4 in 2021.
The coronavirus pandemic eased its grip slowly. Data released in November by the Centers for Disease Control and Prevention showed life expectancy rising to 77.5 in 2022, which restored less than half of what was lost during the first two years of the pandemic.
That data supports The Washington Post’s year-long investigation of America’s life expectancy crisis, which found that, although drug overdoses and gun violence take a horrific toll, the greatest corrosion of life spans comes from chronic conditions such as heart disease, obesity, diabetes and cancer.
The United States for many years had lower death rates from cancer among people younger than 65 compared with peer countries, according to a Post analysis of data standardized by cause of death across countries. But other nations are closing that gap, The Post found. Positive health trends in the United States, including improvements in cancer survival, have lost some momentum, even as chronic diseases such as obesity have risen among people younger than 65.
One way to track the society-wide effects of a disease such as cancer is to measure “years of life lost” — in other words, how many years patients fell short of an average life span. The United States used to have a large advantage among cancer patients younger than 65, in aggregate, compared with peer countries. That advantage has shrunk to one-eighth of its extent 25 years ago, and is now almost gone, The Post found.
Amid this broader phenomenon are puzzling developments such as the rise in colorectal cancer among young people, which has been seen in many highly developed countries, according to Siegel.
One suspected factor is obesity, which has soared among children and young people. Lifestyle changes that increase the risk of being overweight, such as increased consumption of highly processed, low-fiber foods and a lack of exercise, could be boosting the risk of colorectal cancer.
Researchers note, however, that many young colorectal cancer patients have no history of obesity. That suggests that more subtle, systemic factors could be at work, such as changes in gut bacteria — the microbiome — according to medical experts.
For now, this is a medical mystery.
“It’s environmental,” said Amanda Blackburn, 43, a cancer survivor who attends the support group, which is part of the Colon Cancer Prevention Project. “It’s everything we eat, everything we drink, everything we consume. … Americans put things into their food that the Europeans won’t allow in their yoga mat.”
Emily Domhoff, 30, another member of the group, has given up trying to figure out why she has Stage 4 colon cancer despite having no obvious risk factors: “It could be totally random. I’m not sure. I kind of have to let it go for my own sanity.”
Jones, the gastroenterologist, said about 15 percent of colon cancer patients younger than 50 have a genetic vulnerability, such as Lynch syndrome. Another 25 percent of cases involve people with a strong family history. The other 60 percent have no risk factors.
Although some doctors have pointed to bad diet, alcohol use and lack of exercise as factors, Jones notes that the actor Chadwick Boseman, the star of “Black Panther” and other movies who died of colon cancer at 43, “was hardly a smoking, drinking guy. He was a young, vigorous person.”
Ning Jin, a medical oncologist with the Ohio State University Comprehensive Cancer Center, said early-onset colorectal cancer tends to be more aggressive. It is often diagnosed later in the course of the disease, when it is harder to treat. Sometimes, it is misdiagnosed as diverticulitis or some other problem.
“Young people with [gastrointestinal pain] need to consider colon cancer, to realize it is not impossible to get colon cancer if you are 28 years old,” said William Dahut, chief scientific officer for the American Cancer Society.
Listen to your body
Brown was only 24 when she first had symptoms: cramps, blood in her stool, unexplained weight loss, breathlessness. She could feel a lump in her abdomen.
“I had this five-pound tumor that you could feel and you could see on the outside of my body,” Brown said. “I didn’t know it was a tumor. I thought it was a cyst.”
She had no family history of cancer, no risk factors at all — but she had Stage 4 colon cancer.
“The lesson, really, is that it could happen to anybody. No matter age, no matter lifestyle,” she said. “Listen to your body, even if you believe you’re healthy.”
Brown survived after navigating four hospital systems, searching for a treatment equal to her illness. She finally found a clinical trial at Vanderbilt University Medical Center that enabled her to take a game-changing immunotherapy drug.
She is fine now, newly married. She does not say she is “cured.” She hesitantly embraces the idea of being in “remission” but has adopted that word only recently after a new doctor used it. The term of art is “no evidence of disease.”
Renee Lewis, 53, a registered nurse, was 44 when she told her doctor: “I have the symptoms of colon cancer.” The response: “Yeah, but you’re young.” She was told that she probably had irritable bowel syndrome and should take probiotics, over-the-counter products that can support healthy gut bacteria.
Six months later, in November 2014, with her symptoms worsening, Lewis insisted that she needed a colonoscopy. An assistant said the doctor was booked until February.
“Can you please tell him I can’t go to the bathroom, and I haven’t in 10 days?” she recalled saying.
That proved persuasive. She got her screening that December and was diagnosed with Stage 3 colon cancer.
The treatment plan for Lewis, which included surgery, chemotherapy and radiation, proved successful. But Lewis said the mental part of cancer was as challenging as the physical. She had terrible anxiety every time she had a scan. She would study the doctor’s body language to try to anticipate the news the doctor might deliver. She sought help from a therapist — a behavioral oncologist — then, in 2019, decided to start the colon cancer support group.
“People who have been through the fire can pull other people through the fire,” she said.
Blackburn, now retired from the Air Force, was in great shape, running mini-marathons in her spare time, when she was diagnosed six years ago, at age 37. During chemotherapy, she lost her hair and went through menopause early, and she didn’t feel like herself until she was six months free of the chemicals.
She still thinks about her illness every day and regularly attends the support group meetings. A single mother, she said her ordeal has taught her children the importance of resiliency.
“My kids think I’m the baddest-ass person on the planet,” she said.
Liz Stapleton, 45, a corporate executive, also struggled to get a diagnosis when she first experienced pain. Familiar story: She was advised to take a probiotic. She said she may have fit a profile in the medical establishment’s mind: a woman with a demanding full-time job and two young children who had become “a stressed-out mommy” and didn’t have anything seriously wrong with her.
Just getting a screening was nearly impossible: “I was told nine months for a colonoscopy,” Stapleton said.
Early-onset cancer hits young and middle-aged people at critical periods in their adult lives, said Jeanelle Folbrecht, a clinical psychologist who works with patients at City of Hope, a cancer-treatment center in California.
“People are getting interrupted in life right when they are trying to form lasting relationships, establish their identities as a lover, as a career person,” Folbrecht said. “Young adults are trying to figure out their identities by interacting with other young adults, and cancer takes them away from that. They can’t travel or go to parties, or go to school, and it is harder to date.”
For Stapleton, cancer arrived at a different phase in life, when she was balancing the demands of corporate life as well as raising small kids. She powered through chemotherapy as best she could — “It’s just like trying to move through quicksand” — and avoided reading about cancer online. “Don’t read all the things. It’ll scare you,” she said.
A few days before Thanksgiving, having just gotten a clean bill of health, she made a decision: She gave notice at work.
“I’m feeling free,” Stapleton said. “I needed to change my priorities, and this disease revealed that to me.”
Waiting. And hoping.
Domhoff, a teacher at a small private school in Louisville, was on a family vacation in June 2022 when she felt severe pain in her left side. At the emergency room, a scan revealed a tumor on an ovary. Doctors later determined that cancer had spread from her colon.
Domhoff had surgery to remove part of her colon and an ovary. After her first course of chemotherapy, the cancer came back. The doctor told her that she needed to have the other ovary removed. She had the option of an egg retrieval, but that would have delayed the surgery, and she made the hard decision to go forward immediately.
“Now it’s something that I have to deal with emotionally: that I don’t have the option to have biological children,” she said.
Every two weeks this spring and summer, Domhoff drove herself to the cancer clinic. The chemotherapy drugs entered through a port in her chest. She would then drive home with a pump that continued to put chemicals into her for 46 more hours. She would be wiped out for a couple of days, missing work, and be docked 2½ days’ pay every two weeks. She ran out of sick leave. She is covered by an Affordable Care Act plan with a $7,000 yearly deductible.
In the past year, she bonded with one support group member, a woman close to her age with the same type of cancer. That friend died this spring.
“I’m really sad to lose my friend. There’s also a level — it makes me kind of scared for myself. There’s a little bit of a level of survivor’s guilt, too,” Domhoff said.
A scan in June showed no sign of cancer — a huge relief. She still needed six more sessions of chemo. The last one was Sept. 11, and nurses came into her room ringing bells. They presented her with a cake and a congratulatory card. Domhoff rang a bell, too, signaling the end of treatment. Another scan was clear.
Except she knows she’s not really done. She started taking another drug and gets an immunotherapy infusion every three weeks. She will continue to need scans and blood tests. The further she gets from her last all-clear scan, “the more nervous I get that it’s going to come back.”
The port has stayed in her chest, just in case.
The report has been posted on The Washington Post
