2018 Young-Onset Colorectal Cancer Survey Report Covers Disease Stage at Diagnosis and More


Nearly three-quarters of patients with young-onset colorectal cancer are diagnosed with an advanced stage of the disease, a significantly higher percentage than has been reported for their more mature peers, according to a report from the Colorectal Cancer Alliance. The findings of the 2018 Young-Onset Colorectal Cancer Survey Report—which highlights the experiences of patients, survivors, and caregivers—show an acute need to increase understanding about young-onset colorectal cancer among the general population and physicians, especially primary care physicians.

“Once again, our data suggest a gap in awareness about the symptoms and risks of colorectal cancer in people under age 50, both in doctor's offices and at home,” said Ronit Yarden, PhD, the Alliance's Director of Medical Affairs.

Patients with colorectal cancer are considered young-onset if they are diagnosed before they turn 50 years old. In the United States, 11% of colon cancer diagnoses and 18% of rectal cancer diagnoses occur in those under 50.

Younger Patients Diagnosed at Later Stages

The 2018 report shows that 71% of young people with colorectal cancer are diagnosed at advanced stages of the disease—stage III or IV. This is significantly higher than the 60% reported for late-stage diagnoses in the overall colorectal cancer patient population, the majority of whom are over 50 years old.

Many respondents were initially misdiagnosed, the study shows. About 67% of patients reported seeing at least 2 physicians, and some more than 4 physicians, before they were diagnosed correctly with colorectal cancer.

The study also highlights a tendency among patients of waiting to see doctors after symptoms occur. Forty-one percent of patients reported waiting at least 6 months after the initial presentation of symptoms to talk to a doctor. Many then received an initial misdiagnosis.

On a positive note, the 2018 report shows more participants were referred by their primary care physicians for colonoscopies than in 2017, which could represent a trend of increased awareness.

Other Key Report Findings

The survey report includes data from 1,622 people, including 1,195 patients or survivors and 427 caregivers. Seventy-five percent had colon cancer, and 25% had rectal cancer. In addition:

  • 85% of patients/survivors included in the survey experienced anxiety or depression during or after treatment.
  • 80% had children under age 18 when diagnosed.
  • 62% were not aware of clinical trials.
  • 75% of health-care professionals did not provide any information about young-onset colorectal cancer support groups or organizations.

The annual report, now in its 3rd year, gathered data on caregivers for the first time with the 2018 report. For example:

  • 59% of caregivers said their loved one experienced changes in their ability to perform expected social tasks, including those of a spouse, childrearer, friend, or worker.
  • 55% of caregivers said they missed more than 8 hours of work each month.
  • 50% of doctors talked to the patient's family about their elevated risk of the disease and the associated need for screening 10 years prior to the patient's age at diagnosis, or age 40, whichever comes first.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.