Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Apr;213(4):494-503.
doi: 10.1097/JU.0000000000004374. Epub 2024 Dec 12.

Long-Term Urinary and Sexual Outcomes in Pediatric Genitourinary Rhabdomyosarcoma Survivors: A Qualitative Study

Rachel A Saunders  1   2 , Andrea K Balthazar  1   3 , Christopher D Jaeger  1   4 , Monah Javidan-Nejad  1 , Candace Y Chung  1   5 , Judith A Vessey  6 , Richard S Lee  1 , Hsin-Hsiao Scott Wang  1
Affiliations

Long-Term Urinary and Sexual Outcomes in Pediatric Genitourinary Rhabdomyosarcoma Survivors: A Qualitative Study

Rachel A Saunders et al. J Urol. 2025 Apr.

Abstract

Purpose: Genitourinary rhabdomyosarcoma (GU-RMS) often requires multimodal therapy treatment including radiation, chemotherapy, and radical surgery for disease control. The long-term effects of the disease and associated treatments are unclear. We sought to investigate the long-term genitourinary quality of life for adult survivors of pediatric GU-RMS.

Materials and methods: In total, 14 participants (43% female, median age = 32.5 years [IQR = 23.25-39.25], range = 20-52 years, 2 bladder, 1 cervical, 5 paratesticular, 3 vaginal, 2 pelvic, and 1 prostate RMS) agreed to interview about impact of GU-RMS treatment during childhood on quality of life. A semistructured interview guide based on the long-term service and support quality-of-life model and grounded in known GU-RMS experiences was created. Two coders independently coded using thematic analysis methodology.

Results: Six themes emerged: (1) unknown fertility status; (2) lack of education; (3) relationships and difficult communication; (4) incontinence, clean intermittent catheterization, and a bag; (5) lifestyle and learned adaptation; and (6) threats to body image. Across these themes, participants reported insufficient knowledge regarding GU-RMS treatment and its impact on function. Participants were principally concerned with anatomical changes, fertility, pregnancy expectations, and survivorship challenges such as communication with romantic partners.

Conclusions: Survivors of GU-RMS have significant urinary and sexual function concerns that are important to address in long-term survivorship. Clinicians can potentially improve survivors' quality of life through open and honest age-appropriate education on expectations for treatment, fertility preservation options, and long-term effects of treatment.

Keywords: quality of life; rhabdomyosarcoma; survivorship.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest Statement: The authors declare that they have no affiliations with or involvement in any organization or entity with any financial interest in the subject matter or materials discussed in this manuscript.

Comment in

References

    1. Deel MD: Advances in the management of pediatric genitourinary rhabdomyosarcoma. Transl Androl Urol 2020; 9: 2441–2454. - PMC - PubMed
    1. Dasgupta R, Fuchs J and Rodeberg D: Rhabdomyosarcoma. Semin Pediatr Surg 2016; 25: 276–283. - PubMed
    1. Ferrari A, Bergamaschi L, Chiaravalli S, et al. : Metastatic rhabdomyosarcoma: Evidence of the impact of radiotherapy on survival. A retrospective single‐center experience. Pediatr Blood Cancer 2022; 69. - PubMed
    1. Rhee DS, Rodeberg DA, Baertschiger RM, et al. : Update on pediatric rhabdomyosarcoma: A report from the APSA Cancer Committee. J Pediatr Surg 2020; 55: 1987–1995. - PubMed
    1. Indelicato DJ, Rotondo RL, Krasin MJ, et al. : Outcomes Following Proton Therapy for Group III Pelvic Rhabdomyosarcoma. Int J Radiat Oncol Biol Phys 2020; 106: 968–976. - PubMed