Survey of Young-onset Colorectal Cancer Patients Suggests Misdiagnosis May Be Common

PHILADELPHIA – Many patients diagnosed with colorectal cancer before age 50 were initially misdiagnosed, which may lead to diagnosis at an advanced stage of the disease, according to survey results presented during a media preview of the AACR Annual Meeting 2019, to be held March 29-April 3, in Atlanta.

“Despite declining incidence in older adults, there has been a rapid and alarming rise in colorectal cancer incidence among young adults in recent decades,” said the study’s lead author, Ronit Yarden, PhD, MHSA, director of medical affairs at the Colorectal Cancer Alliance, a patient advocacy organization based in Washington, D.C. “We do not yet know the cause of the rising incidence in younger patients, and there is little awareness of this trend among health care providers.”

Previous research has suggested that patients diagnosed with colorectal cancer before age 50 are often diagnosed at later stages of the disease, requiring more aggressive treatments and leading to poorer survival rates. In this study, the Colorectal Cancer Alliance conducted a comprehensive survey of young-onset patients and survivors to gather further information about their clinical, psychosocial, financial, and quality-of-life experiences.

The researchers received 1,195 completed surveys. Fifty-seven percent of respondents were diagnosed between ages 40 and 49; 33 percent were diagnosed between ages 30 and 39, and about 10 percent were diagnosed before age 30. About 30 percent reported a family history of colorectal cancer, and 8 percent had been diagnosed with Lynch syndrome, a genetic syndrome associated with a higher risk of several cancer types, including colorectal cancer.

Some key findings:

• Seventy-one percent of respondents were diagnosed at stage III or stage IV, which is in contrast to patients over age 50, who are significantly more likely to be diagnosed at stage I or stage II.
• Sixty-three percent of respondents had waited three to 12 months to see a doctor after the onset of symptoms, often because they did not recognize their symptoms as signs of colorectal cancer.
• Sixty-seven percent saw at least two physicians before receiving a colorectal cancer diagnosis, and some respondents saw as many as four. Yarden said many of these patients were initially misdiagnosed, leading to delays in treatment.

Yarden said colorectal cancer can be difficult to diagnose in any patient because its symptoms – such as constipation, weight loss, and fatigue – can be associated with many different conditions.

However, she said that a lack of awareness that colorectal cancer can occur in young patients appears to contribute to misdiagnosis.

“Physicians may attribute patients’ symptoms to more common conditions, like hemorrhoids or inflammatory bowel syndrome, and may lack the urgency to refer patients to tests that may identify early-stage colorectal cancer,” she said.

“Young people need to be aware that colorectal cancer can happen at any age and it is not a disease of old people,” Yarden said. “Everybody should listen to their body and, if it doesn’t feel right, go to the doctor to be tested.”

The U.S. Preventive Services Task Force recommends that adults age 50 to 75 be screened for colorectal cancer, and some professional societies recommend starting regular screening at age 45. In addition to these guidelines, Yarden said anyone with a family history of colorectal cancer should initiate screening 10 years prior to the patient’s age at diagnosis, or by age 40.

Yarden said one limitation of the study is that the survey was disseminated through social media and the Colorectal Cancer Alliance website, therefore, respondents were limited to those who had access to technology. Also, she said, white female patients were overrepresented.

This study was funded by the Colorectal Cancer Alliance. Yarden declares no conflicts of interest.