AACR 2019: Survey Finds Young-Onset Colorectal Cancer Is Often Misdiagnosed, Treated at Later Stages


Key Points

  • Most of the survey respondents with young-onset colorectal cancer were diagnosed at stages III and IV, which subjected them to aggressive therapies and a substantial decrease in quality of life.
  • 63% of survey respondents had waited 3 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.
  • Even when visiting their physicians, most patients said they were initially misdiagnosed. 67% of respondents saw at least two physicians before receiving a colorectal cancer diagnosis, and some respondents saw as many as four before being diagnosed correctly with colorectal cancer.

A recent study by the American Cancer Society (ACS) has found that while colorectal cancer incidence in the United States is rapidly declining overall, colorectal cancer rates are increasing among young adults. According to the study, compared with adults born in the 1950s, those born in the 1990s have double the risk of developing colon cancer, and quadruple the risk of developing rectal cancer. The study results prompted the ACS to lower its age recommendation for the start of colorectal cancer screening from 50 to 45 for people of average risk.

However, despite the rising trend in colorectal cancer incidence among younger adults, a survey by the Colorectal Cancer Alliance of survivors of young-onset colorectal cancer has found that a large number of respondents—67%—saw at least two physicians—and some as many as four—before receiving a diagnosis of colorectal cancer, and 71% were diagnosed at stage III or IV. Overall, the survey indicates that physicians and young adults need to be aware of the increasing rate of young-onset colorectal cancer. They also need to recognize the signs and symptoms of the disease and the importance of timely screening when symptoms appear, regardless of age, concluded the study authors. The study by Yarden et al was presented at a presscast in advance of the American Association for Cancer Research (AACR) Annual Meeting 2019 (Abstract 3347 / 13).

Study Methodology

The Colorectal Cancer Alliance, a patient advocacy organization, conducted an annual survey via social media of patients and survivors of young-onset colorectal cancer. The survey tracked the self-reported clinical, psychosocial, financial, and quality of life experiences of young adult colorectal cancer survivors. The survey was completed by 1,195 respondents. The majority of participants (57%) were diagnosed between the ages of 40–49; one-third were diagnosed between the ages of 30–39; and about 10% were diagnosed before the age of 30. Only 8% of the respondents were diagnosed with Lynch syndrome, although about 30% reported some family history of colorectal cancer.

Study Findings

Researchers found that most of the young-onset patients and survivors participating in the survey (71%) were diagnosed at advanced stages of disease, which subjected them to aggressive therapies and a substantial decrease in their physical and emotional quality of life. Many of the respondents reported dealing with neuropathy, anxiety, clinical depression, and sexual dysfunction.

Most of the respondents (63%) waited 3 to 12 months before visiting their physician, in part because they did not recognize their symptoms as colorectal cancer–related. In addition, even when visiting their doctors, most patients indicated that they were initially misdiagnosed. Sixty-seven percent of the respondents reported having seen at least two physicians—and some more than four physicians—before being diagnosed correctly with colorectal cancer. Of the 33% of patients and survivors who have seen only one physician prior to their diagnosis, 17% claimed they were initially misdiagnosed. Medical providers most commonly misdiagnosed patients as suffering from hemorrhoids and inflammatory bowel disease instead of colorectal cancer.

“Overall, our survey indicates that medical professionals and young adults need to be aware of the increasing rate of young-onset colorectal cancer, the signs and symptoms [of the disease], and the importance of timely screening when those symptoms are present, regardless of age. Yet, 50% of physicians did not explain to the patients’ family members about their elevated risk of the disease and their need for screening 10 years prior to patients’ age at diagnosis or by the age of 40,” concluded the study authors. 

Clinical Implications

“There are a number of important aspects related to this research,” commented John D. Carpten, PhD, Program Chair of the AACR Annual Meeting, during the presscast. “One of the most important is that there [are] significant policy implications, [since] many of the current screening recommendations for colorectal cancer are around age 50. For those individuals who are diagnosed with colon cancer in their 30s or 40s, this raises a potentially significant problem. And, of course, additional studies need to be done that actually identify the factors influencing these early-onset cancers, the molecular drivers, or the extrinsic factors that may be causing these types of cancer. Hopefully, that will improve our ability to detect these cancers earlier and to identify the most appropriate and effective ways to treat these cancers, particularly given the fact that they tend to be diagnosed at more advanced stages. And, lastly, as these cancers arise in younger individuals, we definitely have to work toward ways to ensure access to the most appropriate care.”

Disclosure: The study was funded by the Colorectal Cancer Alliance. The study authors' full disclosures can be found at

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®.