Upper Tract Urothelial Carcinoma: Interested in ureter repair options

the main tumor was in my kidney pelvis. On July 18th, they removed my kidney and ureter. Now they are talking about chemo and I need to get a second opinion, this is all very stressful. They called my cancer upper urothelial carcinoma of the left kidney pelvis. They want me to have nivolumab. I can't have immunotherapy due to other health issues I have.
What are they recommending for your treatments?

yes me too, except the main tumor was in my kidney pelvis. On July 18th, they removed my kidney and ureter. Now they are talking about chemo and I need to get a second opinion, this is all very stressful.

I have ureter cancer and already had my left kidney and ureter removed. The surgery went well, and the recovery wasn't bad. Now, I am looking at a round of chemotherapy, which I dread. Have you had your surgery yet? I don't know anyone with the same issue and was hoping to share my experience with someone who is dealing with the same type of cancer. Thanks.

I too have ureter cancer and just today I was told by my surgeon that ureter and kidney removal makes the most sense.

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.

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.

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.

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.

Thank you. I am going forward with the nephroureteraectomy next week.

Hi jdubs! I, unlike you, had a very high grade tumor in my ureter, so it was an easy choice to have my left kidney and ureter removed. Your doctor may be concerned that the cancer will return in your ureter and that's why they want it removed instead of just removing a section of it. Of course without a ureter you have no way for your kidney to drain so, that's why it has to be removed. I have lived a pretty normal life with just one kidney! The main problem I'm having right now is my kidney seems to go into overdrive during the night if I don't watch how much I drink in the evening. Yes, I am now a bed wetter. Not every night like I said, depends on how much I drink during the evening. But, when I'm sooo thirsty or am hardly peeing, I drink more. Then BOOM! It all comes flooding out at once after I'm asleep. It's very annoying. Anyway, if you have any questions or concerns please feel free to ask. Have a great weekend!