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my aunt has stage iv colon cancer. i hope her story makes you think twice about skipping screening

don't let worries about the dreaded colonoscopy stop you from being tested — a simple stool test could save your life.

by jessica bouchard

published feb 22, 2022

6 minute read

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6 minute read

join the conversation

my aunt has stage iv colon cancer. i hope her story makes you think twice about skipping screening

the lack of awareness around testing for colorectal cancer is about people, about lives and about survival. getty

when i was a little girl, no one in my immediate family had the patience to teach me to ride a bike without training wheels. i was too scared of falling, so i never moved. one day my aunt — my mother’s sister — brought me to her house. across the street was a park with a lot of green space. she made me get on one of her children’s bikes, and holding the bike handles with me, she said she’d catch me if i fell.

my aunt didn’t get frustrated if i got scared, or push me to learn faster. she just held those handlebars and didn’t let go until i was ready. she spent hours in the sun with me, going back and forth over the grass until i wasn’t afraid anymore. and then finally, she let me push through the grass by myself, my hands tightly gripping the handlebars.

in the summer of 2021, she was diagnosed with stage iv colon cancer. her symptoms were mixed and inconsistent over the years: constipation, diarrhea, occasionally stomach pain, it never occurred to her — or her healthcare providers — that it could be a sign of something serious. over time, her main issue became rectal bleeding — something that online research initially led her to believe that she had hemorrhoids. when she began to feel pain when she sat —which she described as like sitting on a painful lump all the time — it pushed her to investigate further. that lump turned out to be a tumour.

stage iv meant that the cancer was not only in her colon, but had also spread to her liver. the treatment options were mixed: attack the liver with chemo first, shrink the tumour, add a bit of radiation and then, possibly surgery.

colon cancer doesn’t care about your gender

colon cancer begins in the large intestine (the colon) and is sometimes referred to as colorectal cancer, which combines colon and rectal cancer, which begins in the rectum. colorectal cancer is the third most common kind of cancer to be diagnosed in canadians. in fact, according to the government of canada, one in 14 men, and one in 18 women are expected to develop colorectal cancer in their lifetime.

the disease doesn’t discriminate based on gender, says dr. sharlene gill, a professor of medicine at the university of british columbia, has been treating patients with colorectal cancer for about 19 years. she also thinks that there is a general lack of screening awareness across the country — while the first thing you may think about when someone mentions testing for this type of cancer is a colonoscopy, gill points out there is actually another simpler option.

“the [first] test that’s used in canada for screening actually isn’t colonoscopy,” she explains, “it’s testing the stool for the presence of occult blood.” the test, officially called immunochemical fecal occult blood test or the ifob test, requires a small stool sample done at home, and the results can be mailed in.

“if there is the presence of microscopic blood detected, then you require a colonoscopy to confirm,” she says, but not all positive stool results mean cancer.

in nine provinces and two territories, there is a form of organized colorectal cancer screening. for example, provincial governments send out reminders to residents who are 50 years or older to register for a stool test kit that is sent through the mail. provinces also use public awareness campaigns that include initiatives like social media campaigns, mailed letters, and screening reminders, to bring awareness to the target 50 plus population. quebec is the only province, as of 2018, to not have a screening plan implemented, according to the canadian partnership against cancer.

what’s up with quebec?

barry stein is the president and ceo of colorectal cancer canada. a trained lawyer, in 1995 he was diagnosed with stage iv colon cancer around the age of 40 years old. after several treatments, including some in the united states, as well as clinical trials, there was no presence of the disease. he now creates awareness campaigns and helps guide patients through their own colorectal cancer journeys.

while stein’s work focuses on the whole country, he is based in the province of quebec. when asked why quebec lags behind other provinces and the territories in terms of colorectal cancer testing, stein estimates that it’s likely because quebec is already running behind in colonoscopies — a delay exacerbated by the pandemic. a screening program would not be able to keep up with a higher demand. unfortunately, the result is a public that is unaware and at risk.

“most people don’t think about going to get a colonoscopy and have never heard about the [stool] test because they’re not advertising it [in quebec],” he says.

it’s worse if you don’t have a doctor

according to stein, it can be even more complicated without a family doctor. as of 2017, it was estimated that 22 per cent of quebecers did not have a family health care provider — higher than the national average of 15 per cent.

in quebec, if you are over the age of 50, he says, you can walk into a community health centre — known as centre local de services communautaires (clsc) in quebec — and get a stool test. if you are under the age of 50 and presenting with symptoms, the best bet is to go to a walk-in clinic or the emergency room.

still, even patients who have family doctors can be in for a long process.

“not only do you have to see your family doctor to get a referral, but then you have to go see gastroenterologist,” he says, “and then you have to get a referral from that.” patients, he says, are then two steps away from reaching a diagnosis.

in other provinces with colorectal cancer screening programs, those in the eligible age groups have similar options available. in alberta, for example, a stool test kit can be requested through alberta’s health services colorectal cancer screening program.

‘i was doubled over in pain’

chana cohen was 38 years old when she was diagnosed with stage iii colon cancer. a young mother from montreal, it took three years to be diagnosed after she first saw a doctor about her symptoms, which included stomach pain and blood in her stool.

though she had a referral for a colonoscopy, she was refused, and told she was too young for it to be colon cancer. finally, in may 2015, she had had enough.

“i said, ‘listen, i have no quality of life. i’m, like, doubled over in pain,’” she says. “’i wake up and i have shooting pains in my stomach.’”

cohen’s original doctor referred her to a gi specialist colleague, who heard her symptoms and immediately booked her a colonoscopy. he couldn’t complete it: there was a tumour about seven inches causing an obstruction. she had surgery, done by the original doctor who had refused her colonoscopy. he was extremely apologetic. but cohen had no need for retribution.

“i said, ‘please, let this be a lesson that if anybody that you come across has this kind of situation,’” she told him. “’please, please, please, just give them the benefit of the doubt, do the colonoscopy.’”

covid-19 and cancer screening

we have all watched the pandemic ravage canada’s already precarious health-care systems, a situation that has driven advocates to push for more awareness of colon cancer — from educating general practitioners on recognizing symptoms, to patients understanding what is normal and what is not.

unfortunately, increasing awareness campaigns is too late for my aunt, who is currently undergoing chemotherapy indefinitely. for others, perhaps something in this story inspires you to get screened, or to encourage a loved one to. because more than statistics and survival rates, the lack of awareness around testing for colorectal cancer is about people, about lives and about survival. it’s a story about my aunt: a mother, a sister, a daughter, a friend. i’m writing this story for her.

if she is scared, she’s pretty good at not showing it. she’s grabbing cancer by the bike handles, determined to keep moving forward — just as she helped me do many years ago. she is pushing through grass — it’s harder, but she’s hanging on.

jessica bouchard is a montreal-based writer.

this story originally appeared in the healthing weekender. subscribe here.

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my aunt has stage iv colon cancer. i hope her story makes you think twice about skipping screening

don't let worries about the dreaded colonoscopy stop you from being tested — a simple stool test could save your life.

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if a relative has colon cancer, you may be at risk