From Pelvic Radiation to Social Isolation: A Qualitative Study of Survivors’ Experiences of Chronic Bowel Symptoms after Pelvic Radiotherapy

Abstract Purpose We explored survivors’ experiences of chronic bowel symptoms following pelvic radiotherapy, strategies employed in living with these symptoms, effects on daily activities and roles at home and in the workplace. Methods Semi-structured interviews were conducted with 28 individuals (ten gynaecological, fourteen prostate, four anal/rectal cancer survivors) who had completed pelvic radiotherapy at least six months prior to data collection and who had experience of bowel symptoms during this post-treatment period. Reflexive thematic analysis was undertaken. Results We propose four themes describing a process leading from experience of symptoms to withdrawal from activities and roles. These are: (1) Losing Control (the experience of unintended anal leakage or discharge); (2) Experiencing Embarrassment and Fear (the experience of embarrassment or fear of embarrassment as a result of discharge becoming public); (3) Managing and Reacting (acting to reduce the likelihood of discharge or to prevent this becoming public); and (4) Restriction and Withdrawal (avoiding specific activities or situations so as to reduce or remove the risk of embarrassment). Returning to the workplace presented additional challenges across these themes. Conclusions Impacts of chronic bowel symptoms can be severe. Survivors employ a variety of methods and strategies in living with their symptoms. Some of these support continued role fulfilment but some constitute a withdrawal from pre-treatment roles. Current healthcare provision and statutory protections fail to fully meet needs following pelvic radiotherapy. Implications There is a need to develop and implement evidence-based services and supported self-management programmes for survivors experiencing chronic bowel problems post-radiotherapy.