Young-onset colorectal cancer patients disproportionately diagnosed with advanced disease: Patient self-reported journey of symptom duration and misdiagnosis.

Abstract

3567 Background: 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 an alarming increase of CRC diagnosis among young adults (20-49 years old). The Colorectal Cancer Alliance launched a comprehensive survey for young-onset CRC patients and survivors via social media to track the self-reported clinical, psychosocial, financial and quality of life experiences of this often overlooked, group. Methods: The survey was completed by 1195 living patients and survivors. The majority of participants (57%) were diagnosed between the ages of 40 and 49, 33% of patients/survivors were diagnosed between the ages 30-39 and about 10% were diagnosed before the age of 30. Only 8% of the respondents were diagnosed with Lynch syndrome although about 28% reported some family history. Results: Our survey revealed a higher proportion of the young-onset patients and survivors (71%), diagnosed with advanced stage tumors, compared with ACS report for overall CRC patients (60%). The late stage diagnosis subjected young patients to aggressive therapies and a substantial decrease in quality of life including neuropathy, anxiety, clinical depression, and sexual dysfunctions. Most respondents (63%) waited 3-12 months before visiting a doctor, with higher proportion of females waited more than 12 months compared with males (22% vs. 15% p = 0.02). Moreover, even when visited their doctors, most patients indicated that they were initially misdiagnosed. The majority of the respondents (67%) saw at least 2 physicians, and some more than 4 physicians, prior to their diagnosis. Patients that saw 3 or more physicians prior to diagnosis were more likely to be diagnosed with advanced disease. Interestingly, half of the patients that were seen by one physician also claimed they were initially misdiagnosed. Conclusions: Our survey indicates that medical professionals and young adults need to be aware of the increasing incidence of young-onset CRC, and the importance of timely screening when signs and 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.