Colon cancer is rising in young adults: Should you start screening at 45 or 50?

When Carmen Susman, 46, experienced bladder problems, a doctor suspected he might have kidney stones. An ultrasound of his kidneys unmasked an unexpected diagnosis: He had a mass on his liver. Further testing revealed it wasn’t liver cancer, but instead it was stage 4 colorectal cancer.

“When I was diagnosed, I was feeling great. My wife and I, we were exercising together every day. I had all kinds of energy. I was happy. I felt fantastic,” Susman, a stay-at-home dad from Cleveland, tells TODAY.com. “Then you get this punch in the chest saying you have cancer. I’m like, ‘How can I have cancer if I feel this good?’”

Urinary issues lead to an unexpected diagnosis

Susman noticed he’d feel the urgency to urinate but couldn’t. He visited a urologist to understand what was happening, and that doctor thought he should undergo an ultrasound to look for kidney stones. The scan revealed he had a horseshoe kidney, a condition where the two kidneys are fused at the bottom, which can be asymptomatic. More worrisome, it showed a mass on his liver, and doctors ordered  an MRI to learn more.

“There was a nurse saying, ‘We see this all the time. People come in and it could be some fatty mass there. You’re going to be fine,'” Susman says. “After the MRI, they knew. … Her demeanor completely changed, and I was just crushed walking out that day. I knew that something was wrong.”

At first, doctors thought it was liver cancer.

“It’s pretty much endgame,” he says. “For about three weeks, until I started meeting with some doctors, that’s what I was thinking — that I had about a year or two to live.”

But his doctors knew that primary liver cancer was rare, so they performed a colonoscopy, and they found a tumor in his rectum. (Because of when he was diagnosed he had not had a chance to schedule his first colonoscopy yet).

“They were like, ‘OK, you don’t have liver cancer. It’s rectal cancer and here’s the plan — we’re going to do radiation, chemo and curative surgery,’” he recalls. “I’m like, ‘Would you say that again? Can you go back to the heart of it?' It went from me thinking that I have a year with my kids and my wife to really hoping to move forward.”

Susman’s cancer had metastasized to his liver. Still, he felt surprised that doctors considered it curable. He went through short term radiation, which was five days of back-to-back targeted treatment. Then he started chemotherapy.

“Your body immediately starts getting drained and you can start to feel different,” Susman says.

Two weeks into it, he began throwing up bile and he rushed to the emergency room. Susman had a blockage in his intestine that needed to be removed immediately.

“I had to have emergency surgery and they (placed) a colostomy bag because I was just so backed up,” he says. “It delayed the chemo treatment; it delayed the surgery. So, it got to the point where I was trying to do anything possible just not to delay anything else.”

Signs and symptoms of colorectal cancer in young patients

Once considered an older person’s cancer, colon cancer diagnoses in young people have experienced a dramatic increase since the 1990s. A recently published report from the American Cancer Society found that people under 55 made up double the percent of colon cancer diagnoses in 2019 compared to 1995 — 20% versus 11%.

“If you went back to not that along ago, in the ‘90s, only one out of five colorectal cancers are being diagnosed in people under the age of 55,” Dr. William Dahut, chief scientific officer for the American Cancer Society, tells TODAY.com. “It went from 11% to 20%. That’s a big change in a relatively small period of time.”

Still the causes for this increase remain elusive. Experts suspect that a diet rich in processed meats and low in fiber, obesity, alcohol consumption and sedentary lifestyles contribute. But they believe there is more to it.

“It’s at least possible that those are the things driving this. We do see more men than women having colorectal cancer,” Dahut says. “Whether that’s again due to a poor diet or obesity and less exercise is at least a possibility.”

Dr. David Liska, director of the Young-Onset Colorectal Cancer Center at Cleveland Clinic, agrees that the reasons for the increase are unclear.

“The quick answer is we don’t have a perfect understanding of why it is happening,” he tells TODAY.com. “We do know that it is happening, and it’s happening consistently now for the last two decades at least. And it’s happening all over the Western world.”

If the trend continues, the number of younger people with colorectal cancer by 2030 will continue multiplying.

“If the current pace continues, by 2030 the rate or colon cancer in young adults, meaning people under the age of 50, will have doubled, and for rectal cancer it will actually have quadrupled,” Liska says. “It’s probably an interplay of both environmental factors and some host related factors.”

Still, diet, lack of exercise and obesity can’t provide a complete understanding of why rates increase.

“I have plenty of patients who are young and healthy and fit and can still get colorectal cancer,” Liska says. “So, it’s not the full story.”

Colorectal cancers can be detected early in a precancerous state, one of the few cancers that can, the experts say. That’s why screening through a colonoscopy remains essential. Starting at age 45, people should be undergoing a colonoscopy.

Liska says if he encounters a precancerous polyp during a routine colonoscopy, he removes them.

“The vast majority of polyps that are found during colonoscopies are removed then and there during the colonoscopy,” he says. “(We) stop the polyp in its tracks and prevent the cancer. There are some precancerous polyps that are larger and require special types of treatments to remove them.”

Another reason screening is important is because some patients do not have symptoms.

“It is common,” Liska says. “Again in the younger patients ... they’re usually diagnosed because of colonoscopy.”

Symptoms include:

• Bloody stool.

• Changing bowel habits.

• Unexplained abdominal pain.

• Unexplained weight loss.

• Unexplained fatigue.

For some, the stigma of sharing bowel symptoms might keep them from telling their doctor.

“Patients don’t necessarily bring up the symptoms,” Liska says. “It’s a topic that people aren’t comfortable talking about.”

When to get screened

The American Cancer Society, the U.S, Preventative Services Task Force, and the American College of Radiology all recommend that people who have an average risk of colon cancer (so no family history) start screening at age 45.

However, the guidance around colon cancer screening can be confusing. There are multiple ways to screen for colon cancer, such as stool tests or a colonoscopy, and different expert groups have different guidance when to get screened based on your risk. For example, the American College of Physicians announced in July 2023 that "average-risk adults" who aren't experiencing colon cancer symptoms can wait until age 50 to get screened. And a study from October 2022 caused an uproar when it concluded colonoscopies are associated with little to no decreased risk of death (though the data actually told a more complicated story, experts told TODAY.com at the time).

The bottom line on colon cancer screening is to talk to your doctor about your own individual risk of colon cancer and assess together when to start, Dr. Cedrek McFadden, board certified colorectal surgeon, said in an Aug. 1 segment on TODAY. Most insurances will cover colon cancer screening for average risk patients starting at age 45 since they tend to take the lead of the USPSTF, he added.

If you have symptoms or are high risk for colon cancer, you'll likely need to start screening before turning 45. But again, speak with your health care provider.

Recovering from colorectal cancer

After doctors addressed the blockage in his intestine, Susman resumed treatment and underwent surgery to remove the rectal and liver tumors in July last year.

“There wasn’t any spread in the liver,” he says. “There was nothing really left of the tumor to begin with before surgery.”

Susman’s lymph nodes and bloodwork did not show any further signs of cancer. In November, they reversed his ileostomy and he no longer needs a colostomy bag.

“As of right now, I’m cancer free,” he says. “We’re starting to return to normal. I am living a normal life. Physically I have the energy level. I’m able to run around with my kids again, exercising again.”

Grappling with the feelings of having cancer feels a little tougher to Susman.

“You’re doing these scans and you’re doing this bloodwork thing and it’s almost a bimonthly reminder (that) something could go wrong,” he says. “Something could change.”

He encourages loved ones to keep up with their colonoscopies.

“There’s almost a stigma around any type of conversation surrounding that,” Susman says. “If you don’t have symptoms go get a colonoscopy at 45 and if you have any type of bigger irregularities go get it checked. It’s super curable.”

His experience with cancer changed his perspective on life. Before, he’d put off bucket list goals, thinking he’d have plenty of time to get to them. Now, he’s seizing the moment.

“You can’t go out and buy time, but I feel like I was gifted time,” he says. “A lot of people don’t get that.”

This article was originally published on TODAY.com