Long-term Sexual and Urinary Function in Genitourinary Rhabdomyosarcoma patients
Hsin-Hsiao Scott Wang, MD, MPH, MBAn, Tenny Zhang, MD, Meghan Shanahan, BA, Alan B. Retik, MD, Richard S. Lee, MD.
Boston Children's Hospital, Boston, MA, USA.
Background: The multi-disciplinary approach in managing genitourinary rhabdomyosarcoma (RMS) has led to longer survival of these patients. However, little is reported regarding the long-term sexual and urinary function in this population. We sought to investigate their long-term function via validated questionnaires.
Methods: We reviewed our records from 1970 to 2018 to identify patients with bladder/prostate, pelvis, paratesticular, and vagina RMS. Patients less than 7 years old, presenting with unresectable metastatic disease, or with < 2 years follow-up were excluded. The clinical details were recorded. Most current urinary (AUA Symptom Scores) and sexual (for patients >15 y/o, IIEF-males; FSFI-females) survey results were obtained.
Results: In total, 30 patients were contacted and 15 patients (4 bladder, 6 paratesticular, 4 vaginal, 1 pelvic) completed the surveys with a response rate of 50%. 60% were male. Median age was 29 years (range 17-49 y/o) with median of 25 years of follow-up. All received chemotherapy. 60% received radiation. 33% underwent radical cystectomy or pelvic exenteration. For urinary function among those with bladder sparing therapy (n=9), the reported urinary function was fair. All reported "none/mild," while 3 reported "moderate" symptoms. The most common complaint was urinary frequency (67%). In contrast, cystectomy patients (n=6) had eventual continent urinary diversion and reported symptoms related to slow pouch emptying resulting in straining (67%) and intermittent drainage (67%). Most patients (80%) ranked their urinary quality of life "delighted" or "mostly satisfying". For sexual function, all paratesticular RMS patients had RPLND. All reported high erectile function. The remainder of the male cohort all underwent radical cystectomy (there were no males with bladder sparing in this cohort) and all reported low to non-erectile function and an unsatisfactory sex life. In contrast, females who underwent vaginal resection or radiation reported some impact to sexual function, except one female with bladder RMS and eventual continent diversion who reported highly satisfactory sexual function. The most common complaints in the females were painful intercourse, and decreased vaginal lubrication.
Conclusions: In our cohort, most GU RMS survivors maintained good urinary function. Males with radical cystectomy and females with vaginal resection and/or radiation scored lower in sexual function. Females with radical cystectomy may have minimal impact to sexual function. An additional qualitative study is warranted to delineate the impact of RMS and treatments to long-term quality of life outcomes in this patient cohort.
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