Acton family grapples with unexpected colon cancer diagnosis as cases in young people rise in Ontario

When Kris Toledo, 44, sat in front of the computer in his airy Acton home with his wife, Aileen Santos, to chat about how dramatically his life had changed in just a few short months, he didn’t look like someone who had been given a frightening diagnosis. 

A teacher and father of two, he looked content and alert, his tone enthusiastic and optimistic. 

But like many other people under 50, he has found himself living with locally advanced colorectal cancer–something he, like so many other young adults, never anticipated. 

“If I look back, I ignored a lot of symptoms,” he told insauga.com. “I had pretty bad stomach pains, but I let them take their course and I thought they would go away. I also had blood in my stool for a while, but I ignored it.”

Last December, Toledo, who had also been suffering from recurrent fevers, unexplained weight loss and a frequent urge to use the toilet, asked Santos to drive him to the emergency department after he developed severe back pain that he thought was sciatica. 

“When I got to [Oakville Trafalgar Memorial Hospital], they ran some tests and asked me to put aside the back issues to see if there was something else and they brought up diverticulitis,” he says. 

Toledo said the hospital ordered tests to see if he was suffering from the condition, which can cause pockets of the intestines to become inflamed. He underwent a colonoscopy, a procedure that allows doctors to use a scope to view the inside of the rectum and intestines while a patient is sedated, six weeks later and learned his diagnosis was more grim than anticipated.

“They called my wife. I was all drugged up but I could understand in a fuzzy way and they said they found a tumour,” he says. 

“I was diagnosed with stage four cancer and they said the tumour was the size of an orange.” 

While Toledo’s diagnosis was eventually downgraded to stage three–meaning there’s no evidence the disease has spread to distant organs such as his liver or lungs–he still had to undergo a life-altering but reversible ileostomy that will temporarily allow waste to be excreted through a hole in his abdomen. He is also undergoing chemotherapy, which he says makes him nauseous and fatigued. 

But while Toledo and Santos are optimistic his treatment will be successful, the news came as a shattering surprise.

“I was shocked,” Santos, a school chaplain and author, told insauga.com.

“I was like, ‘How can this be?’ He’s only 44. We were also dealing with my daughter’s [upcoming surgery], so I broke down. It was a shock because of his age and because we thought it was just hemorrhoids or a fever. We told all his friends, ‘Go get checked if your stool isn’t normal. Don’t think it’s something else. Make time to go get checked.’” 

While colorectal cancer remains relatively rare in young adults, people under 50 have been diagnosed more frequently over the past two decades, and doctors and medical experts aren’t sure why. 

“The overall incidence [of colorectal cancer] has slowly decreased, but there’s been an increase in that [under 50] subpopulation overall,” Dr. Ted McAlister, a surgical oncologist with the William Osler Health System, which operates hospitals in Brampton and Toronto, told insauga.com. 

“In our hospital, we haven’t noticed much of a change. It’s a small number to begin with and the minority of people diagnosed with colorectal cancer. You tend to remember the young patients more than someone diagnosed at a more average age.”

But while the cancer remains uncommon in younger people, cases in patients in their 20s, 30s and 40s are not unheard of, and more people began talking about symptoms and screenings when actor Chadwick Boseman, best known for starring in Marvel’s Black Panther franchise, died of the disease in 2020. He was 43. 

According to Cancer Care Ontario, rates in adults between 30 and 49 increased by 5.2 per cent per year between 2005 and 2012, with both men and women impacted. The CCO says colon cancer rates have increased by 4.3 per cent per year since 2005 and rectal cancer rates have increased by 7.2 per cent per year since 2006. 

CCO notes that prior to 2005, colon cancer incidence rates were slightly decreasing at 0.9 per cent per year and rectal cancer rates were increasing at only 0.7 per cent per year before 2006. 

According to the Canadian Cancer Society, colorectal cancer is expected to be the fourth most commonly diagnosed cancer in Canada in 2023 (excluding non-melanoma skin cancers). The organization says it’s the second leading cause of cancer-related death in men and the third in women.

On average, 66 Canadians are diagnosed with colorectal cancer every day. 

The disease is considered preventable with screenings, as they allow doctors to remove pre-cancerous lesions (polyps) before they become malignant.

McAlister says that no one is entirely sure what’s behind the increase in cases in younger patients.

“I think that’s still something we’re trying to figure out. We don’t have a good reason that anyone has found to explain it. One theory is related to the higher prevalence of risk factors for colon cancer in that subgroup. Looking at modifiable risk factors like diet, obesity, and exercise, they might be more prevalent in that age group. I don’t think there’s been anything definitive that’s been a proven cause for this.”

According to the CCO, the cause is likely multifactorial. According to a March 2016 report, the development of the disease is linked to diets high in red and processed meats, excessive alcohol consumption and excess body weight. The report also cites cigarette smoking as another possible risk factor. 

“Physical activity and consumption of foods containing dietary fibre have been shown to have a protective effect,” the report reads. 

The small but significant increase in cases in young patients has prompted some health organizations to recommend that screening tests, which are offered to people at average risk of the disease who are not exhibiting any symptoms, start at 45 rather than 50. 

For people with above-average risk, such as those experiencing bloody stools, a persistent change in bowel habits, recurring abdominal pain or sudden weight loss, as well as people with a strong family history of the disease or other conditions such as Crohn’s disease, colitis or polyps, earlier screenings are recommended. 

In 2021, the U.S. Preventative Services Task Force advised lowering the recommended age for a first screening to 45, a recommendation also backed by the American Cancer Society. In Ontario, screenings for average-risk people with no symptoms still begin at 50–something McAlister says is still supported by evidence. 

“I think it’s still appropriate [to screen at 50] because the vast majority of people diagnosed are over age 50. We don’t have evidence of benefit starting at a younger age than that,” he told insauga.com, adding that people in their 20s, 30s and 40s should still be aware that yes, they can get colon cancer–and health care providers should be aware, too. 

“When [young] people have symptoms, it’s thought that they don’t have colon cancer, and it takes longer for their symptoms to be investigated. Pay attention to people’s symptoms; just because they’re young doesn’t mean they shouldn’t be worked up in the same way.” 

McAlister says cancers in the colon and rectum can cause bleeding with bowel movements, bowel blockages and overall changes in bathroom habits. People with these symptoms should ask for a colonoscopy rather than a FIT (fecal immunochemical test) that simply looks for the presence of blood. 

“Blood in stool that’s fresh or black and tarry, a change in how your bowels are emptying, more cramps, more pain, more straining, not eating as well and losing weight, tiredness or anemia–all of these things are indications to go for a colonoscopy rather than a FIT,” he says, adding that while a FIT is easy, inexpensive and risk-free, it’s imperfect and must be repeated every two years. 

Now that Toledo is entering his fifth round of chemo, he’s focused on taking care of himself–which means foregoing lifting anything heavy or aggravating the neuropathy in his hands by touching anything too hot or cold–spending time with family and friends, praying and living in the moment. 

“Halfway through chemo, we decided to live a new normal. I took time off but then went back to work. The worst thing is we’re planners, and now we can’t plan,” says Santos.

“We have to wait until the six rounds of chemo are over, then there’s more radiation and chemo, then a CT scan, then a surgery. We have to move on with our lives in a sense.” 

Both Toledo and Santos say one positive aspect of the experience is the overwhelming support they’ve received from the community. 

“We go to a small church and the priest came here to give us the eucharist,” Toledo says, adding that it’s not always easy for him to go out. 

“It was the biggest shock. Our whole street came to our door—our kids’ friends’ parents, their schools, our schools,” Santos says, adding that people have brought meals and helped with housework. 

“Good can come out of the most horrible thing. We felt so covered in blessings.” 

Now, they also want to raise awareness and let people–especially younger people–know that alarming symptoms should never be ignored and if you have a feeling something might be wrong, speak to a doctor. 

“In my mind, I had a feeling I had cancer, but I didn’t want to hear it. I prayed a lot, ‘Let these symptoms go away, let me go back to normal.’ It was a blessing when I had back pain,” Toledo says.  

The couple is also coping by focusing on the support they’ve received and planning for a future with cancer in the rearview mirror. 

“Travel. Once he’s all clear, we’re jumping on a plane because we can’t travel right now. We’re going somewhere,” Santos says.