Survey Shows Young-Onset Colorectal Cancer May Be Overlooked in Exam Rooms

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The Colorectal Cancer Alliance recently released findings from its latest survey of patients with young-onset colorectal cancer and survivors. The Never Too Young Survey shares the self-reported medical, psychosocial, and quality-of-life experiences of this often-overlooked population to better understand their challenges and needs.

Young-onset colorectal cancer refers to individuals diagnosed younger than age 50. Alliance research has shown that patients with young-onset colorectal cancer are increasingly diagnosed with advanced disease requiring aggressive treatment in comparison to those diagnosed after age 50—the age to begin screening according to guidelines from the U.S. Preventive Services Task Force.

Key Young-Onset Trends Identified

Based on data from a 2019 survey, the latest Never Too Young Survey Report found that:

  • 49% of respondents indicated they had no knowledge about the signs and symptoms of colorectal cancer before their diagnosis.
  • 75% reported they saw at least two different physicians, and 36% were seen by three or more physicians, before receiving a correct diagnosis.
  • 40% indicated their providers dismissed their symptoms and concerns.
  • Patients diagnosed between the ages of 19 and 39 were more likely to report their concerns were dismissed by their doctors.
  • The most common misdiagnosis is hemorrhoids, followed by irritable bowel syndrome and anemia.
  • Nearly 75% of survey participants shared that they have been concerned about their mental health.

Steep Increase in Late-Stage Detection Among Younger Groups

Colorectal cancer incidence has increased in people between the ages of 20 and 39 since the mid-1980s and among those between the ages of 40 and 54 since the mid-1990s. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 and 1% in individuals between the ages of 50 and 64, in contrast to a 3.3% decrease in people aged 65 and older.

The survey, which featured up to 140 questions, was completed by 885 patients and survivors. The majority (83%) were first-time survey participants. It identified several important gaps throughout colorectal cancer treatment and survivorship, exposing a critical issue concerning late-stage diagnosis among patients with young-onset colorectal cancer.

Delay in detection occurs due to multiple challenges—chiefly misinformation and dismissal by medical providers of patients’ stated symptoms. Patients with young-onset cancer also wait to see their doctor after symptoms arise and frequently receive incorrect diagnoses. This finding indicates a knowledge gap, both among the public and the medical community, in terms of early identification of signs and symptoms. It is critical for these symptoms to be moved to the forefront of cancer education.

Finally, the survey findings highlighted the unique challenges of cancer treatment for younger patients regarding fertility and sexual dysfunction, as well as pain and wellness beyond the course of treatment. Many patients still felt uninformed prior to or during treatment, even though the majority of patients with young-onset cancer indicate ongoing pain and side effects that change the trajectory of their daily life and experience outcomes related to sexual function and/or reproductive health.