8. FOLLOW-UP
Given the low incidence of PUC, follow-up has not been systematically investigated. Therefore, it seems reasonable to tailor surveillance regimens to patients’ individual risk factors (see Section 6.2). In patients undergoing urethra-sparing surgery, it seems prudent to advocate a more extensive follow-up with urinary cytology, urethrocystoscopy and cross-sectional imaging, despite the lack of specific data.
8.1. Research priorities
The clinical literature shows clear gaps related to the diagnosis, management and follow-up of patients with PUC. As this is a rare disease, data will likely become available through quality registries and datasets, similar to those currently being set up by the European Reference Network for rare and complex urogenital diseases and conditions (eUROGEN) initiative.
The Panel identified the following topics of interest:
- The (long-term) efficacy of urethral-sparing surgery and chemoradiotherapy for genital preservation in localised and locally advanced tumours
- The prognostic impact of neoadjuvant and adjuvant treatment modalities in locally advanced disease
- The therapeutic benefit and clinical safety of programmed cell death-ligand 1 inhibitors for the treatment of advanced PUC
- The role of MRI in the local assessment of response to therapy.