Hello Everyone, I have been diagnosed with Upper Tract Urothelial Carcinoma earlier this year. Had nephrectomy to remove tumor as well as kidney and ureter. Currently undergoing immunotherapy.
Anyone here with similar condition or treatment?
Thanks ...and Merry Christmas to you all!
Hello Snake65 and a warm welcome to the group. I went a different route to you so not much help. I am sure others with similar treatment to you will be along soon. There are many different experiences here. Reading your bio, I see you are living in China. Are you having your treatment there? Best wishes.
Hi Snake65,
Welcome to the group, but for me welcome to the UTUC club, we are a rare one it seems. I have managed to find two others on here with the same cancer and they were here a few years ago now, but more importantly still going strong. If you type in TCC you can see the conversation trail.
Sorry you couldn’t complete your chemo, but good you are having immunotherapy now after op. You will see in my bio I had 3 cycles of Gem/cis followed by radical nephroureterectomy then a chemo wash in bladder 10days after surgery. I am now cancer free and having 3 monthly cystoscopies and 6 monthly CT scans of lungs, abdomen and pelvis. Please feel free to ask anything, and I wish you luck in your ongoing journey
Annie x
Hi Snake55
I cannot offer any words of wisdom regarding your diagnosis or treatment but I did want to welcome you to this friendly and supportive group. I hope you can find someone on here who shares some of your experiences.
In the meantime Merry Christmas to you. I hope you enjoy a wonderful festive time in China.
Love Ade xx
Yes, I have had surgery and treatment in China. The quality of treatment seems to be good (given the size of the population, they're well experienced!) but the service is not great sometimes. They do things very differently here. Language is a real problem.
Hi Snake65,
I had Gem/Cis chemo and then my bladder and ureter removed a couple of years ago so my treatment was different up to that point. But after the operation I did start Immunotherapy - Nivolumab, which had just been authorised for bladder cancer. I managed 3 months out of the proposed 12 because I got peripheral neuropathy - pins & needles in fingers and feet (quite a rare reaction for immuno they say though some types of chemo are likely to cause it). So then the oncologist stopped it and gave me high dose steroids to clear the symptoms. The hands are OK but when I walk a lot my heels and toes sting a bit. Hopefully the immuno still helped to protect me though.
Macmillan has a handout on immunotherapy which you could download if you find it useful.
Best wishes,
Latestart
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