Anyone lost both kidneys to cancer & on dialysis? Stoma questions

Make an appointment with an oncologist urologist to ask.

Similar situation: https://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/bdcdb7-kidney-transplant-with-indiana-pouch

She is a very interesting case study. Salvage nivo nuked her kidneys but also have her 10+ years remission so far.

I see my oncologist on the 24th. It's not confirmed yet but the found abnormal cells in my urine and my remaining kidney suspicious of urothelial carcinoma. I'm getting retested on the 20th. The doctor that did the test already has mentioned that my remaining kidney would have to be removed. No mention of anything else like, radiation, immunotherapy or anything else.

That would mean I would not need my stoma since my body would not produce urine. I would need dialysis the rest of my life. I have been having ctDNA tests since September of last year. All of which were negative.

I know I'm jumping to my own conclusions. I'll check the link out that you sent. Thanks for responding

@ronzee50, I added your question to the Ostomy group as well. I'll be interested what you learn from your upcoming appointments.

@colleenyoung I saw Dr. Tyson today. The plan is to do six weeks of Jelmyto, through a nephectomy tube placed directly in my kidney. Thus way, the chemo will only be in my kidney amd not run through my entire body. It's a "kick the can down the road" effort to buy more time to keep my kidney and not have to remove it and go through dialysis.

Good luck!

Just found out that having the tube in will result in my urine being removed through the tube with some possibly coming out my stoma. So, now I will have a bag attached to the end of the nephrostimy tube plus my urostomy bag. I might need two night bags. Will probably have to empty bot bags at the same time. Not supposed to get the incision bandages wet.

Just more fun things to deal with for something that has an approximate 50% success rate.

@ronzee50, I can imagine that this is not the addition "fun" you are looking for. Will you have a session with an ostomy nurse to go over the mechanics? How are you doing?

Well, I got lucky. The original information was incorrect. The tube is plugged so no urine can come out. It does have to be flushed and the dressing changed every day for two weeks. But, I still can't shower until that gets approved.