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machado: there are a lot of reasons for missed cancer diagnoses, but not having access to screening should never be one of them

cancer doesn't care what your age is or how healthy you are or how good you look — anyone is fair game for this insidious disease, and we have research to prove it.

by lisa machado

published apr 12, 2024

6 minute read

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6 minute read

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canadians born after 1980 are two to two-and-a-half times more likely to be diagnosed with colon cancer before age 50 than previous generations of the same age. getty

the skies were heavy with clouds the day that jason manuge passed away. “f**k cancer” was how his partner of eight years signed off the tweet she wrote from his @cancer canuck account announcing his death.

he was known in the cancer community as cancer canuck — the guy who, after a stage iii colon cancer diagnosis in 2022 that soon became stage iv, took to social media to share his story and raise awareness of the disease. he also supported research, lived experience and peer support in his work as a patient partner with the queen’s cancer research institute’s patient engagement network, a patient advisor with the southeastern regional cancer program’s patient and family advisory council and a chat facilitator with young adult cancer canada (yacc).

i saw jason at a cancer conference in november. he looked a little tired, but good. and now, just like that, he is gone. he was just 36.

like many cancers, a family history can put you at risk — this was the case with jason, whose mom also passed away from colon cancer. diagnosed in 2012, she underwent chemotherapy, which was successful, only to find out in 2014 that not only was the cancer back, but back with a vengeance: in her abdomen, ovaries, lungs and bones. she died in 2016.

obviously, jason knew the symptoms of colon cancer well — abdominal cramping, blood in stool, unexplained changes in bowel habits, to name just a few — and sought screening as soon as he began to experience them. at first, doctors said he had years of life left, and then suddenly not: the cancer had spread to his bones.

his death comes at a time when the rising rates of colon cancer in young people is in the news. dr. michael cecchini, a co-director of the colorectal program in the center for gastrointestinal cancers and a medical oncologist at yale cancer center told the new york times that early-onset colorectal cancers have been increasing by about two per cent each year since the mid-1990s. that makes colorectal cancer the top cause of cancer deaths in men under the age of 50 and the second-leading cause of cancer deaths in women under 50 in the united states. it’s a worrying trend that doctors are seeing around the world, including in canada.

according to a research paper based on a symposium held by the colorectal cancer resource & action network (ccran) in 2021, canadians born after 1980 are two to two-and-a-half times more likely to be diagnosed with colon cancer before age 50 than previous generations of the same age. equally worrying is that, beyond a direct familial link — to colorectal cancer itself or a precancerous polyp — which cecchini says puts you at a higher risk, no one knows for sure what’s driving the increase.

of course, there are the usual suspects that are often linked to cancer, like diet, lifestyle and environmental factors. but these connections are vague. some studies show that early-onset colorectal cancers have different mutations than those found in older adults. it’s a lack of knowledge that makes early screening that much more important, especially when there are symptoms and regardless of age. and therein lies the rub: screening only works if you get it.

just this week, the ottawa citizen wrote about russell mcissaac, a 35-year-old who died of stage iv colon cancer after his symptoms — abdominal pain, cramping and blood in his stool — were dismissed by doctors as not serious because he was so young. ignoring signs of the cancer based on age means that people end up in their doctor’s office again with late-stage, more serious disease. and let’s be clear: there are a lot of reasons that diagnoses get missed, but not taking a patient’s symptoms seriously should never be one of them.

while the u.s. preventive services task force lowered the recommended age for colorectal cancer screening from 50 to 45 in 2021, the canadian task force on preventive health care’s guidelines for beginning screening remain stuck at age 50, despite clear indications that earlier testing would slow the growing tidal wave of colorectal cancer cases in younger people. it’s something ccran has been working hard to change.

there are a number of ways to be screened for colorectal cancer, according to cancer care ontario (cco). the fecal immunochemical test (fit) is an at-home screening test for people at average risk of getting colorectal cancer. ordered for you by your doctor, it involves putting a sample of stool into a small container and mailing it to a lab in a self-addressed envelope. fit is now used instead of the older guaiac fecal occult blood test (gfobt). there is also a flexible sigmoidoscopy, in which a doctor uses a small, flexible tube with a tiny camera on the end to look inside the rectum and lower part of the colon, while a colonoscopy allows a doctor to look at the entire colon using a long, flexible tube with a tiny camera on the end. this procedure is pretty famous for the tortuous prep that’s required to completely clean out the colon to ensure a clear view — but as a colorectal cancer patient interviewed in the nyt piece said, ” … doing a one-day cleanse to prep for a colonoscopy is far better than having poop coming out of your stomach into a bag.”

by the way, there are tests not recommended by cco because of uncertainty over effectiveness: metabolomic (blood or urine) tests; dna (blood or poop) tests; computed tomography colonography (a test that takes images of the inside of the colon by x-ray); double contrast barium enema (an older test that takes images of the inside of the colon by x-ray); and capsule colonography, where a capsule-sized camera takes pictures of the colon after being swallowed.

certainly, anything about poo and our butts can be awkward and embarrassing — unless, of course, you are four. after all, there’s nothing sexy about scooping poop into a small jar with a miniature wooden spoon and (gasp!) putting it in a mailbox, or having a small camera pushed inside your bum — but both take just minutes and could save your life.

the year i turned 50, my doctor began talking about booking a colonoscopy given my cancer history, even though my fit came back fine. i am embarrassed to admit that i put it off, dreading the ghastly preparation that would have me starving, gagging on gallons of repulsive liquid that tasted like oily dirty socks and locked in my bathroom for a couple of days. turns out the prep wasn’t as bad as i had expected and, opting out of sedation, i got to see the whole thing in real-time, lying on my side, peeking through my fingers to watch the exploration of my colon, which was both off-putting and captivating.

then there was the moment that the gastroenterologist paused abruptly, pointing out a polyp and instructing his assistant to snip it off. it was an eyes-wide-open moment for me. he said that it was good that i was there as it likely would have become a problem for me had i waited any longer.

fortunately, it was caught, with absolutely no thanks to me — well, i showed up — but rather, because i have a proactive healthcare team that insisted and i met the guidelines for screening. without those two things, how it would have ended, well, it’s anyone’s guess.

could earlier screening have saved jason’s and russell’s lives, and the hundreds of other younger people who have died of colon cancer? yes, there’s no question — at least they would have had a fair chance. and while their stories highlight the need for updated screening guidelines that reflect the concerning trends in diagnoses (how long will people die unnecessarily?), they also serve to raise awareness of this deadly disease, the importance of testing — no matter how awkward or uncomfortable — knowing your body and family history. all the things that jason advocated for.

but just as important as understanding the symptoms and speaking up when things don’t feel right is the reminder to healthcare providers that colorectal cancer is increasingly a risk for younger canadians — no matter what the guidelines say — and they deserve access to life-saving screening.

cancer doesn’t care what your age is or how healthy you are or how good you look — anyone is fair game for this insidious disease, and we have research to prove it.

it’s time to take symptoms seriously, so that everyone has a chance.

lisa machado is the executive producer of healthing’s advocacy & better health group. she can be reached at lmachado@postmedia.com

lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: there are a lot of reasons for missed cancer diagnoses, but not having access to screening should never be one of them

cancer doesn't care what your age is or how healthy you are or how good you look — anyone is fair game for this insidious disease, and we have research to prove it.

machado: long-term care is still not ok

machado: it's struggling, but there's a lot about universal healthcare that works

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machado: there are a lot of reasons for missed cancer diagnoses, but not having access to screening should never be one of them

cancer doesn't care what your age is or how healthy you are or how good you look — anyone is fair game for this insidious disease, and we have research to prove it.

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