Colorectal cancer (CRC) is the second leading cause of cancer-related death among males and females in the US. Despite a decrease in overall incidence and mortality, there has been a rapid and alarming increase of CRC diagnosis among young adults (20-49 years old). The Colorectal Cancer Alliance is a patient advocacy organization with a mission to raise awareness for colorectal screening and prevention, provide patient and family support and fund innovative research to eradicate CRC. The Colorectal Cancer Alliance conducted an annual comprehensive survey of young onset patients and survivors, administered over social media, to track the self-reported clinical, psychosocial, financial and quality of life experiences of this often overlooked, group. The survey was completed by 1195 living patients and survivors. The majority of participants (57%) were diagnosed between the ages of 40 and 49, a third were diagnosed between the ages 30-39 (33%) and about 10 percent were diagnosed before the age of 30. Only 8% of the respondents were diagnosed with Lynch syndrome although about 30% reported some family history. According to the American Cancer Society, most CRC patients older than 50 years old are diagnosed in early stages of the disease. Conversely, our survey revealed that most of the young-onset patients and survivors (71%), were diagnosed at advanced stages (stage III and stage IV), which subjected them to aggressive therapies and a substantial decrease in quality of life including neuropathy, anxiety, clinical depression, and sexual dysfunctions. Most of the patients (63%) and survivors waited 3-12 months before visiting their doctor, partially because they did not recognize their symptoms as CRC related. Moreover, 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 CRC. Of the thirty-three percent of patients and survivors who have seen only one physician prior to their diagnosis, 17% claimed they were initially misdiagnosed (~5 percent of overall patients). Medical providers most commonly misdiagnosed patients as suffering from hemorrhoids and inflammatory bowel disease instead of CRC. Overall, our survey indicates that medical professionals and young adults need to be aware of the increasing incidence rate of young-onset CRC, the signs and symptoms, 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.

Citation Format: Ronit I. Yarden, Kim L. Newcomer, Never Too Young Advisory Board, Colorectal CancerAlliance. Young onset colorectal cancer patients are diagnosed with advanced disease after multiple misdiagnoses [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 3347.