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Upper Tract Urothelial Carcinoma: Interested in ureter repair options

Posted by jdubs @jdubs, Nov 17, 2023

I have been diagnosed with a low-grade carcinoma tumor in my right ureter. Rather than a lifetime of ablation and uteroscopy treatments, I have opted for a removal of the ureter and kidney (which is healthy). Any insights into ureter repair options? My doc says not really an option for me. Any other inputs out there?

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jdubs | @jdubs | Nov 22, 2023
In reply to @lrwants2know "UTUC is very tenacious. High grade muscle invasive UTUC destroyed my right kidney in 9 months...." + (show)
@lrwants2know

UTUC is very tenacious. High grade muscle invasive UTUC destroyed my right kidney in 9 months. Ureter was blocked at the renal pelvis with fibrosis. Underwent radical NU with right bladder cuff removal in August 2022 - no malignancy in ureter or bladder cuff. Non-muscle invasive tumours in bladder found beginning March 2023. TURBT at end of March. BCG treatment for 6 weeks, recovery for 6 weeks. BCG Refractory - muscle invasive tumours in bladder around the bladder cuff incision found mid-July. Another TURBT end of July. Large tumours redeveloped in 5 weeks at same locations. 4 rounds (8 weeks) ddMVAC chemotherapy ended October 26th. Cytoscopy check tomorrow. Future = weekly chemo+ 5 x daily radiation therapy for 5 weeks if no tumours present; otherwise bladder removal early 2024.

Eventhough the UTUC was limited to my kidney, "spore" cells managed to survive and hit my bladder. Good luck and make sure that they check the bladder regularly - note that ureteroscopy might allow any potential spore cells to travel to the kidney if they decide to leave it and splice the ureter.

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Thank you for your reply. I am scheduled for nephroureteroectomy next week. A long regimen of ablative ureteroscopy is not an attractive option for me.

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richardab | @richardab | Nov 23, 2023

You can always seek a 2nd opinion, especially in a case such as this. Are you seeing specialists in urological cancer who are very experienced or a general urologist? Best of luck going forward.

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amyb5 | @amyb5 | Nov 27, 2023

Sorry to be late to reply. Good luck with your surgery. My experience with UTUC included the surgery you are having, removed the kidney, ureter, bladder cuff, & as much of the invasive tumor as they were able. If your other kidney & ureter are not affected, you don’t need to reattach the ureter. It is an aggressive cancer, best to be removed (my opinion). People live without problems with one kidney.
Best wishes to you. I hope your recovery goes well.

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