I see an oncologist next week. After having intermittent gross hematuria since March of 2020 and seeing 5 different docs who either said it was my prostate or I was passing a stone or it was because of my blood thinner, one doc told me sometimes the cause of bleeding is never found, I started bleeding heavily on a Sunday and developed huge clots in my bladder which obstructed the outlet. I couldn't pee and went to the ER then Monday I saw a new urologist who did a cystoscopy to remove the clots and that was when he actually saw my tumor. It had been missed on the cysto I'd had 4 months earlier just as it hadn't been seen on the 6 pelvic CTs and 2 ultrasounds in the last almost 2 1/2 years. The biopsy showed T1 high grade urothelial with 50% signet ring cells. My TURBT was about 3 weeks later, that's when the muscle invasion was found along with "abundant" carcinoma in situ.
When do you have to decide on having your bladder removed? Is it after the chemo or are they saying you need the cystectomy regardless of if you respond to the chemo or not? What kind of chemo are you having... what drugs and is it intravesical or intravenous? Is your urologist doing it or are you seeing an oncologist? Are you being treated at a large cancer center where they have lots of experience with reconstruction after cystectomies? My urologist says I'm too old at 73 to have a neobladder but I think I'm in pretty good shape other than age. When I asked him if he does neobladders he said "I have done them but...." so if my bladder comes out, first I need to talk with someone who doesn't plan my treatment around his surgical abilities. The closest city big enough to have a large cancer center is about 5 hours away, I think I'll try to see someone there. I'll talk to the oncologist about it on Thursday.