Hi,

My UTUC only involved right kidney. Final diagnosis of cancer too late for anything but removal - entire kidney was eaten. No indication of cancer in left kidney, yet. Nephrostomy tube and ileal diversion stoma in place. Stoma non-functional due to kidney stone dropping into ureter and blocking it.

My UTUC started in right kidney (removed Aug 2022) as high grade invasive. Recurrence in Bladder early 2023 (non-invasive), progression to invasive high grade in June 2023. Bladder removed Feb 2024. Metastisized to bone and pelvic wall March 2024. Chemo treatments Cisplatin/Gemcitabine April 2022, ddMVAC Sept 2023, Cisplatin/Gemcitabine reduced to Carboplatin/Gemcitabine June 2024 (decreased kidney function, major infections). Immunotherapy Nivolumab Sept 2022 to Aug 2024). The "Hail Mary just a few more months" Enfortumab starts this week.

Nephrostomy tube is uncomfortable when sleeping on my left side, and I itch under the adhesive, but it drains my kidney very well. Surgery x 2 was not fun. Stoma is currently useless.

Ask urologist and oncologist about the potential for bladder involvement with repeated surgeries (i.e. seeding of cancer cells in the bladder, etc.) Also ask about the risk of the cancer becoming more aggressive.

If the Jelmyto common side-effects are acceptable to you and your specialist plus oncologist answers your questions fully, it might be a better option than kidney removal if the tumours keep developing. The Jelmyto wesite says about a 50% chance of no tumours after 3 months and 25% chance of no tumours after 12 months. So it might not be a complete cure.