Lack of Support and Information Regarding Long-Term Negative Effects in Survivors of Rectal Cancer

Background Rectal cancer is a common cancer. Curative treatment frequently includes surgery, radiation, and chemotherapy, all of which can result in long-term adverse effects. Objectives This descriptive, hypothesis-generating study sought to obtain input from survivors of rectal cancer regarding key features of their long-term experience. Methods The authors administered a 12-question, Internet-based survey to self-identified rectal cancer survivors to assess (a) how neuropathy, fatigue, trouble with ostomy or bowel movements, and trouble with sexual function affect daily life and (b) whether knowing about these symptoms a priori would have changed their treatment decisions. Responses are presented descriptively. Qualitative analysis assessed themes reported in response to an open-ended question. Findings Responses from 116 survivors of rectal cancer, 55 of whom provided open-ended responses, were obtained. Respondents were predominantly young and several years from treatment. They reported that their lives were affected "a lot" by bowel or ostomy trouble, trouble with sexual function, fatigue, and nerve toxicity. Survivors reported that knowing whether symptoms would affect their lives "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.