Life after Pelvic Exenteration for Rectal Cancer: The Patient and Carer Perspective on Long Term Consequences and Survivorship.

Objective: To explore the perspectives and experiences of patients and carers living with the long-term consequences of pelvic exenteration.

Summary background data: Pelvic exenteration is accepted as the standard of care for selected patients with locally advanced or recurrent rectal cancer. With contemporary 5-year survival reported at 40-60%, the number of long-term survivors is expected to increase. The long-term consequences of such radical surgery for patients and their survivorship needs are not well understood.

Methods: This was an exploratory, qualitative study conducted at a high-volume pelvic exenteration centre. Semi-structured interviews were conducted with survivors of pelvic exenteration surgery for locally advanced or recurrent rectal cancer and their carers. Purposive sampling was used to ensure a diverse cohort. Data were thematically analysed.

Results: Three major themes were identified: 1. The consequences of surgery are the price you pay for survival: the majority of participants accepted the sequelae of surgery as the cost of survival. 2. Our lives are changed forever: Adjusting to changes in body appearance and function was an ongoing challenge. Chronic pain, stomas, altered bowel function and mobility issues impacted work and social life. 3. The good days and bad days as a survivor: While several participants reported a more positive approach to life, many were living with a pervasive fear of recurrence and/or dying, and the ripple effect on family and friends was significant.

Conclusions: Although survivors of pelvic exenteration accept the long-term consequences of surgery as the price of survival, these are significant, and improved access to support services in the community may better equip survivors to manage these challenges.