Objective: To study the excess prevalence of distressful symptoms after radical surgery for urinary bladder cancer.
Methods: We included all patients who underwent cystectomy due to bladder cancer before 1996 in Stockholm County. A control group was randomly selected from the general population. Information was collected by means of an anonymous postal questionnaire.
Results: Completed questionnaires were returned by 310 (71%) controls and 251 (85%) cystectomized individuals. A 5-fold (reservoir) and 9-fold (conduit) increase in defecation urgency and a 4-fold (reservoir) and 6-fold (conduit) increase in faecal leakage were reported in individuals operated on. Urinary tract infection was increased 3-fold in cystectomized individuals compared with controls, during the previous year 26% of the patients reported a symptomatic infection. The perception of a reduced physical attractiveness due to disease was more than 5-fold increased in the men operated on compared to the controls. The majority, 135 out of 201 (67%), reported that they would have refused alternative bladder-sparing procedures if they decreased the prospects of survival by even as little as 1%.
Conclusions: The patient's situation after cystectomy is considerably impaired due to changed bowel and sexual function, urinary tract infections and a sense of decreased attractiveness. However, most patients are in spite of this unwilling to compromise survival.