Stephanie Budgell does not want others to go through her experience of a Stage 4 colorectal cancer diagnosis, and is calling on health authorities to lower the age for screening.
"I want family doctors to see that it's not an old man's disease anymore," said Budgell, 36, who lives in Pasadena on Newfoundland's west coast, was diagnosed in March 2020, at the start of the COVID-19 pandemic.
She has undergone a year of multiple surgeries to remove most of her liver and rectum, as well as chemotherapy and radiation to tackle the life-threatening disease that all started when she wasn't feeling right and she found blood in her stool.
At her age and fitness level, Budgell — an avid runner and cyclist — thought it was unbelievable to have this type of cancer.
"If you saw me today, would you think I was a Stage 4 cancer survivor? Probably not. If you saw me the day I was diagnosed, you probably wouldn't think that," she said in an interview. "People look really healthy and sometimes they are not."
When she started chemotherapy she found a community of people her age — mostly online — who were going through the same cancer. Doctors told her during her treatments that colorectal cancer is on the rise in people under than 50.
The authority's colon cancer screening program lists risk factors like a diet high in red meat and low in fibre, lack of exercise, obesity, smoking and drinking alcohol.
Budgell was not affected by any of these risk factors.
Eastern Health, which manages cancer care for Newfoundland and Labrador, recommends colorectal cancer screening start at 50 years of age. Budgell wants the screening age lowered to 45.
"In speaking with my community, a lot of their doctors passed them off as being too young to have colon cancer or their symptoms were something else like Crohn's or colitis. So the average is four or five appointments before they are referred to a specialist," she said. "I would like to see that change."
The province's colon cancer screening program encourages the average 50-to-74-year-old to have an at home-screening test to check for blood in the stool.
Earlier screening could mean more harm than good: MD
Eastern Health says more than 90 per cent of people diagnosed with colon cancer are over the age 50, but someone younger than who has any symptoms — like blood in the stool, odd bowel habits, pain or tiredness — should contact a family doctor for a colonoscopy.
In a statement to CBC News, Eastern Health says the participation age is guided by national and international recommendations, such as those provided by the Canadian Task Force on Preventative Health.
"Our screening technologies are not perfect," Dr. Ainsley Moore, chair-elect of the Canadian Task Force on Preventive Health Care, said in a statement.
Moore said in some cases a colonoscopy can lead to intestinal perforation, bleeding and even death in some people. She recommends screening only for people 50 and older.
"This is because of concerns that the benefit of screening would be limited among younger people and that we would likely do more harm than good to people in that group by screening. Hopefully, someday, our technologies will improve, but that is where we are now," Moore said.
As for Budgell, she is awaiting the results of a recent computerized tomography (CT) scan to determine if there is any more evidence of cancer.
While she waits, she runs. She is training for a 25-kilometre trail run on the west coast this summer.
Budgell turns to social media often to post about her colon cancer, a disease she says is not easy for people to talk about.
She encourages young people to get screened if they have any symptoms.
"If you don't talk about, if it's not out there, people don't know it exists, so this is one way of getting the word out there," she said. "Hopefully there isn't any shame associated with it."