Survey Results: Never Too Young
Colorectal cancer is the second most diagnosed cancer in Canada. Twenty-seven thousand new cases and 9,700 deaths in 2020 alone.
Incorrectly perceived as an “older person’s disease,” many Canadians do not know that the incidence of colorectal cancer is increasing in those under 50.
Medical teams often do not suspect the disease to develop under the age of 50. Thus, young people are often diagnosed with colorectal cancer at later stages of the disease
“Cancer doesn’t discriminate. That was a big surprise when I was at Princess Margaret Hospital during my chemo and IV treatments. I was walking in thinking I was going to be in a room full of older people. I was gobsmacked by the amount of people that looked younger, around my age. It was not at all what I expected”. —Pierre, 40.
Precisely for this reason, we created the Never Too Young: Early-Onset Colorectal Cancer survey. Its purpose is to examine early age onset colorectal cancer patients and caregivers regarding their experiences.
Here are a few highlights:
The awareness of Early-Age Onset Colorectal Cancer among respondents was low, with less than 30% knowing it could happen in those under 50. Only 15.7% understood the common signs and symptoms.
Among respondents, the most common symptom was blood in their stool, followed by weakness/fatigue, bloating/gas and diarrhea.
More than 40% of patients felt dismissed after seeking medical care due to their age. A significant number (78.1%) saw two or more doctors before receiving a diagnosis. Unfortunately, 76.5% of respondents received confirmation that their cancer was already at a late stage (III or IV).
“Being told you may live to see your kids enter kindergarten if you’re lucky is a shock. I don’t know where I would be today if I didn’t seek out a second opinion.” —Meagan, 31
Sexuality and fertility
Early-onset patients also faced unique challenges with relationships, intimacy, and fertility. Yet, most of them (59.7%) did not receive guidance regarding these issues. The lack of information provided is highly concerning, as 1 in 2 patients reported a partial or total loss of sexual function.
Most patients cited concerns with their mental health. However, only a fraction of these patients felt the need to seek help. It suggests that a stigma remains around mental health issues. Because of this, patients may not feel supported in seeking the necessary assistance to navigate a life-changing diagnosis.
Nonetheless, (78%) can enjoy life, and 66.7% are satisfied with how they are coping with the disease.
The results of the survey helped us to identify gaps in screening and services. It also provided relevant data regarding critical subjects, such as regional differences in care, the average time between presenting symptoms to diagnosis—necessary information to address the unique needs of young colorectal cancer patients. We look forward to using these findings to inform our upcoming Never Too Young initiatives, including a Patient Toolkit and Best Practices Model for oncology centres treating EAO CRC patients.