Upper Tract Urothelial Carcinoma: Interested in ureter repair options

Hi I am also looking for some of the same answers you are so if you get any updates or personal suggestions please share. My father was diagnosed with bladder cancer in 2021 after some local treatments (shots in his stomach to try to keep it inside the bladder) 6 months in and found out that it wasn't working and was transferred to St. Luke's (Houston TX) it had spread outside of the bladder so in 2022 he went into surgery to remove his bladder, prostate "just to be safe" they said and parts of the ureter. Decided to have a neobladder which was made from the intestine that was cut. Fast forward to the last 8 months he's been in and it of the hospital for dehydration and the neobladder still doesn't know that it's no longer an intestine therefore it's passing mucus which is getting stopped up in the bladder and backing up into his right kidney. Now after a stay in the hospital for dehydration which is the new norm about every 3 months so they keep him and give him fluids of course put a catheter in which has to be flushed because of the mucus stoping it up. They finally did a CT scan to just check and make sure there was no cancer that's came back and the bad news came that he has urothelial cell carcinoma as well as showing a 3.1CM mass along the upper part of the right kidney (getting scope done to see if that is in fact cancer or just a mass. But it's very suspicious for renal cell carcinoma. My father also can't do the autoimmune chemotherapy as he was doing that after they removed the bladder completely out and was only able to do 3 rounds of chemo when his cancer doctor immediately shut it down as it was causing damage to his intestines in his gut. So didn't get to even do half of the chemo he was supposed to do. Now here we are and the chemo they are wanting to give him for the urothelial cancer is Enfortumab-vedotin injections which is also done with the autoimmune therapy which he can't do so now the chances of it working stop to 40% instead of 50%... has anyone else had this form of cancer and what's worked best for you. I am definitely into researching anything that can help substitute the autoimmune therapy by herbs or supplements that help build up the immune system to fight off the cancer cells. Any and every suggestion is appreciated as I just lost my mom and this is a total blow that I have to research u til I have hit all dead ends.

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.