My husband has TCC of both kidneys and CIS of his bladder due to Lynch Syndrome which is a genetic mutation that predisposes him to several different kinds of cancer. I was wondering if there is anyone else in this community who has urothelial cancer of the kidney(s). Thanks for your input!
Colleen
Welcome Colleen.
I just had an operation to remove my left kidney, ureter and bladder cuff. I am waiting to get the pathology results but we are expecting that it is TCC.
Thanks for your reply. Since I last posted this my poor husband has been thru so much. They attempted to treat the CIS of his bladder with BCG instillations but he developed TB from the BCG treatments and has been on 4 meds to treat the TB until recently. They also had to take him off the TB meds because he developed severe neuropathic pain down his left leg and after too many tests to count they believe it may be due to the TB meds. Within the last couple of days he now has edema in the let too. He just had EMG studies done last week and we should be hearing back from his neuromuscular neurologist soon. The last scope showed no tumors in his kidneys but as expected he still has CIS of the bladder due to the fact that he couldn't have the BCG anymore. So we have another scope coming up in Feb. and then his oncologist will decide if he needs his bladder removed, which is what I am anticipating. The reason for waiting is that with the neuropathy and pain he couldn't tolerate any surgery now anyway.
Good luck with your situation. And please feel free to post whenever you need or would like to. We are all here for each other.
Hugs. It’s tough I know. I get frustrated with people that don’t get it with my wife’s situation...
So sorry your husband is going through so much. I pray things get better soon and that you have a lot of support.
Take it one thing and day at a time. Hugs.
When were you first diagnosed?
New Here: Question Regarding Kidney Cancer Followup Care 
Gladiator?..:not so much