Anyone dealing with UTUC (Upper Tract Urothelial Carcinoma)?

Welcome, @slm189, I'm tagging fellow UTUC members like @jdubs @richardab @podrunner1 @lrwants2know @amyb5 @jcefly @sepdvm @mshel613 who have experience with upper tract urothelial carcinoma. I'm also adding @pcondon who has experience with Jelmyto.

Slm, has Jelmyto been recommended as the next treatment option? How are you doing?

Thank you. I have had 3 tumors removed within 18 months. All non invasive low grade. After the second one was removed, urologist referred me to another urologist that administers Jelmyto. He didnt really encourage the treatment because of high stricture rate. The latest report has lowered the stricture rate to 12% with antegrade instillation, a percentage I can accept. Waiting for an appointment with the new urologist. Experiencing no pain or bleeding. Just can't see ablating tumors every six months. Thanks for tagging me!

Hello @slm189. My husband did not have UTUC as his was bladder origin, but the constant recurrence and subsequent ablations quickly became a burden. With the original tumor highly aggressive and invasive he chose to have neobladder surgery after BCG failure, chemo, and partial cystectomy. We did have experience with ureteral stricture after that surgery though. That was the beginning of new specialists, nephrostomy tubes, and ureteral surgical repair. While nephrostomy tubes were manageable, and antegrade surgery proved successful, he was left with decreased renal function due to hydronephrosis from the strictured ureter. I would ask a lot of questions about those risks with this drug, which it appears you are doing. Good luck to you.

Thanks for replying, your info, and advice. Such a hard disease to navigate. Hope your husband and you are ok.

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.

I truly appreciate you sharing your story and advice. It's been very hard to find patients with this disease. You have given me much to think about. Thank you. Hoping for the best outcome for you as you continue your journey with this relentless disease.

Mine was confined to the bladder. Had one follow-up cystoscopy, I'll have another in a few months. Best to you in defeating these cancers, it sounds like you have an excellent team on your side.