QUALITY OF LIFE, DECISIONAL REGRET, AND FEAR OF RECURRENCE IN PATIENTS WITH MUSCLE-INVASIVE BLADDER CANCER MANAGED WITH SURVEILLANCE AFTER CLINICAL COMPLETE RESPONSE TO NEOADJUVANT CHEMOTHERAPY

Introduction

While the standard-of-care for muscle-invasive bladder cancer (MIBC) includes radical cystectomy (RC) and urinary diversion, many patients are unfit or unwilling to undergo major surgery and instead opt for a bladder-sparing approach. Data regarding the safety and durability of surveillance in patients who achieve a clinical complete response (cCR) to neoadjuvant chemotherapy (NAC) is accumulating and encouraging. Despite this increasing interest from both patients and clinicians, there is limited data on the quality of life of cCR patients. In this study, we surveyed patients in our prospectively maintained clinical database who achieved cCR and were managed primarily with surveillance.

Methods

We contacted all patients from our prospectively maintained cCR database for enrollment in our study. Consenting participants were emailed via Docusign three validated quality of life surveys, including the Bladder Cancer Index (BCI), the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF), and the Decision Regret Scale. These surveys evaluate urinary function, bowel habits, sexual function, fear of cancer recurrence, and decisional regret. Survey responses were recorded in REDCap under a de-identified profile. Survey data was analyzed using descriptive statistics.

Results

From a total of 61 patients in the cCR database, 33 patients were alive and available to participate. To date, 19 (58%) patients have completed the surveys. Patient demographics and disease characteristics are presented in Table 1. Of the 19 participants, 79% (15/19) had a native bladder, 5% (1/19) had a neobladder, 5% (1/19) had a continent catheterizable pouch, and 11% (2/19) had an ileal conduit. Of the cCR patients with durable response, 100% (15/15) had no decisional regret and 67% (10/15) had little to no fear of cancer recurrence. Conversely, in cCR patients with recurrence and subsequent RC, 25% (1/4) had significant decisional regret and 75% (3/4) had some fear of cancer recurrence. Of the durable response cCR patients, 93% (14/15) had no urinary bother while 50% (2/4) of the recurrence and subsequent RC patients had some urinary bother.

Conclusions

As surveillance in patients with MIBC who achieve cCR after NAC becomes increasingly utilized, data on the implications of lifelong surveillance, frequent non-invasive recurrences, and the fear of cancer recurrence will be important to consider. In the data available at this time from our institutional cCR cohort, all patients with a durable response were free of decisional regret, nearly all (93%) had no urinary bother despite frequent interventions, and two thirds lacked fear of cancer recurrence. Study limitations include small sample size, response and selection bias given the survey format, and limited generalizability given patients were recruited from a single institution. Nevertheless, these results suggest that patients managed with bladder-sparing after achieving cCR have acceptable quality of life. An expanded cohort is being compiled and comparisons with an upfront radical cystectomy cohort are ongoing.