Quality of life after pelvic exenteration for gynecologic cancer: Findings from a qualitative study

Objective: Pelvic exenteration (PE) in carefully selected gynecologic cancer patients has a 5-year survival rate as high as 60%. Thus, there is a growing number of PE survivors dealing with the effects of this radical surgery. The current study sought to explore women's physical, psychological, and social quality of life (QOL) after PE. Methods: Fourteen women who had undergone PE for recurrent gynecologic cancer at least 1 year previously completed semistructured qualitative interviews designed to elicit expectations and experiences of QOL following PE. Thematic analysis was used to code transcripts for both a priori and emergent themes. Results: Themes included PE versus palliative care, preparedness, persistent symptoms, the not so normal new normal, new rules of social engagement, support, emotional diversity, and bouncing back through adaptive coping. Key differences with previous studies include the explicit acknowledgement of the need for palliative care, the chronic nature of multiple, seemingly unaddressed physical symptoms in survivorship, and the predominance of positive psychological symptoms. While a minority expressed emotional distress and regret for undergoing PE, most articulated a sense of resilience gained through a variety of adaptive coping strategies. Conclusions: Findings underscore the persistent physical, psychological, and social effects of PE on QOL and the need for comprehensive, multidisciplinary patient care before and long after surgery. Findings should promote development of a best practice clinical pathway for the care and education of women who undergo PE with curative intent for gynecologic cancer.