Upper Tract Urothelial Carcinoma: Interested in ureter repair options

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

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.

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.

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?

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.

There is no such thing is autoimmune therapy. There is immunotherapy: pembrolizumab, atezolizumab, nivolumab and avelumab are the most common for UC. EVP (combination therapy) is the most successful. But there are patients that achieve complete response on EV only.

I am not sure herbal therapy will make a difference.

EV is not traditional chemotherapy. It is a targeted treatment. The substance looks for NECTIN4 cells and then delivers a microscopic chemo-like payload.

You may want to check the medical notes as you are confusing a lot of terminology. There are rare UC variants but there is no such thing as UCC. And immunotherapy is not chemotherapy and vice versa. There are combinations that are not very common. Such as combining nivolumab with chemotherapy before EVP became standard of care.

Also: all urinary diversions are made from the small intestine (Indiana pouch, IC, neobladder). This means it always produces mucus. Your father having mucus clogs is exceedingly rare. Neobladders also result in incontinency for many and requires many months and even years of continuous training.

I would put your faith in EV. Hopefully it works. If not, most likely, that will be the last therapy.

Spend some time reading up on BCAN and sign up for their forum (Inspire) where you can find many experiences.

A separate urgent matter is the suspected RCC. That needs to be biopsied ASAP. It may very well be UTUC. If it turns out to be RCC that is a significant complicating factor. EV is not indicated for RCC. And two treatments at the same time for two separate malignancies would typically indicate nivolumab as it is indicated for both. So also finding a renal oncologist or perhaps urological and renal combined oncologist is very important.

Sorry to read what you are going through. Try to take a step back and not panic. It will not help your father nor yourself. One day at a time. Focus on spending quality time together while you still have it.