Purpose This descriptive, hypothesis-generating study sought to obtain input from rectal cancer survivors regarding key features of their long-term experience. Methods We administered a 12-question internet-based survey to self-identified rectal cancer survivors to assess 1) how neuropathy, fatigue, trouble with ostomy/bowel movements, and trouble with sexual function affect daily life; and 2) whether knowing about these symptoms a priori would have changed their treatment decision. Responses are presented descriptively. Qualitative analysis assessed themes reported in response to an open-ended question. Results Responses from 116 rectal cancer survivors, 55 of whom provided open-ended responses, were obtained. Respondents were predominantly young (62% <50 years at diagnosis) and several years from treatment (53% ≥ 2 years). They reported their lives were affected “A lot” by bowel/ostomy trouble (49%), trouble with sexual function (45%), fatigue (34%), and nerve toxicity (24%). Between 24-50% of survivors reporting a symptom affected their life “A lot” would have changed their treatment decisions with a priori knowledge of these lasting effects. Key qualitative themes were the lack of information about and support for negative effects. Conclusions Rectal cancer survivors report substantial symptom burden, decisional regret, and inadequate support. Interventions should target patients with high distress during their survivorship transition.
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