Upper Tract Urothelial Carcinoma: Interested in ureter repair options

I have been diagnosed with UTUC with a low-grade tumor in my right ureter. Instead of a lifelong schedule of ablation and uteroscopy, I am choosing to have the ureter and kidney removed. But wondering about uteral repair/splicing. My doctor says this is not a good option. Any insights into ureter repair treatments? My kidney is healthy and hate to lose it.

Welcome, @jdubs, I moved your 2 discussions into one that shows in both the Cancer support group and the Kidney support group. That way you only have one place to monitor for replies and we can get a group discussion going here. I'm tagging fellow members like @podrunner1 @lrwants2know @amyb5 @jcefly @sepdvm @mshel613 who have experience with upper tract urothelial carcinoma.

You might also be interested in this related discussion:
- Living after Kidney Removal From UTUC
https://connect.mayoclinic.org/discussion/living-after-kidney-removal-from-utuc/

When will you be having surgery? Did your surgeon explain further why ureteral repair is not an option?

Hi Colleen-- Thanks for the reply. I am scheduled for 11/27 with Dr. Lyon. He did mention ureter repair, but I really do not clearly understand why my case is open to that option. I really am worried about the loss of my healthy kidney.

John

@jdubs I’m not really sure why I got your post as I don’t follow cancer groups. It might have something to do with the change Colleen made to include your post in the Kidney support group. I don’t understand why you have to lose a healthy kidney if your problem is the ureter. But I do know that you only need 1 good kidney to live a healthy life. Can the kidney that is going to be removed be donated to someone that needs one? That is a strange question I know but I tend to think outside of the box.

My husband had complications after a radical cystectomy and neobladder formation for aggressive bladder cancer. His one kidney was damaged by a blocked ureter from the surgery and we saw different ureter specialists at Mayo Clinic Rochester where all his surgeries were performed. Dr. Boyd Viers was able to reattach the open ureter to the neobladder. I can imagine that location of the tumor makes a difference as to the option of surgery to remove tumor and repair ureter. Perhaps you can get your information to a referral center ureter specialist for a second opinion? In the long run, it is better to be living with one functional kidney and no cancer if you can be cancer free. Good luck.

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!

Cheryl, Unfortunately no. My kidney cannot be donated as I am a cancer patient. I wish I could!

Cheryl

No they will not accept my kidney as I have cancer in my body. I would donate if I could.

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

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.