Anyone dealing with UTUC (Upper Tract Urothelial Carcinoma)?

Thanks for the update. Wish you best of luck. I am kind of worried about this nephrostomy tube and stay minimum 6 weeks. Mentally getting ready for 6 weeks but NOT for one year treatment recommended.

Another small tumor (1cm and looks like recurrence) ablated in right ureter on 4/16/2025. Followup today 4/28/2025. This is 5th time tumor has been ablated. I tolerate this procedure really well with no complications. Dr still suggests ablating tumors vs Jelmyto treatment. He did state that maybe when I am 80 and can't take ablation any more, Jelmyto would be appropriate (I am 73). Have decided this could be my new norm every 6 months have a tumor ablated. So plan is CT urogram and cystoscopy in 3 months and go from there after reviewing urogram. Going into my 3rd year with this and research seems to indicate recurrences may slow down. Understand that I have no pain or bleeding. Wishing everyone with this diagnosis healing and peace.

@slm189, I'm glad that you are able to tolerate ablations well. sorry to hear that yet another tumor had to be ablated. You sound like you have a good doctor who monitors you closely.

My partner has NMIBC. He has had over 48 tumors ablated over the past 3 years. Nothing seems to work for him. BCG caused TB, non of the other chemotherapy seems to make any difference. So discouraged.

Thanks for replying to my post. So sorry to learn of your partner's BC journey. While my UTUC hasn't spread to the bladder, I have read about BC. I imagine your partner's surveillance schedule is every 3 months. Yes, it's very discouraging to find repeat tumors. I have accepted ablation every 6 months is my new normal. I take solace in the fact that this most likely will not end my life (I read this on a distinguished panel's pod cast) and I am being treated at a teaching hospital, so figure I am helping to train the next generation of urologists. One of the residents advice to me was "go live your life." I look forward to your future post telling me no tumors were present on surveillance! I do think it's important to share our stories.

Has anyone had experience with the ENLIGHTED trial? I have a family member that was recently diagnosed with low grade UTUC and is seeking kidney sparing options. Any insights would be appreciated.

I have no direct experience, but have read about the Enlighted trial. Seems to show promising results. I had considered it, however, the trial locations were too far from my home. Hoping that when the procedure gets approval and if I am still dealing with my low grade, non-invasive UTUC it will be available at my teaching hospital. Currently am dealing with recurrent ureter tumors with ablation.

Good luck to you on your journey! Yes, it doesn't appear to be life threatening so far, and I hope your future posts report on no new tumors as well! Do you mind me asking what hospital you are being treated at? (hmm... somehow that sounds like bad grammar) We are at the Huntsman Cancer hospital in Salt Lake city.

I've not heard of the Enlightened trial. New information on this website is very helpful!

I am being treated at The University of South Florida Morsani College of Medicine. I was referred there by my local urologist, who thought Jelmyto might be a good alternative treatment for me. Jelmyto is not widely available in my area. After talking to USF urologist, he didn't really recommend Jelmyto because of the high stricture rate. Long story short, decided to leave local urologist for USF. I figure if there are any new treatments they would be more readily available at USF or their affiliates. Moffit cancer center is near USF, however, they are out of network with my insurance. Please understand that so far I have no symptons-no pain, no bleeding. My UTUC was an incidental finding on a lung scan. Besides the inconvenience of frequent surveillance and scaniety, my life really hasn't been affected. Have recently taken up pickleball and love it! My next procedure is schedule for the end of November and will do an update. So good to correspond with someone else who understands.