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Looking to connect with people who had Cystectomy & Neobladder
Hi, I am a 63 year old physically fit male. I would like to talk with similar patients who have has cystectomy and neo bladder procedure. I was diagnosed with high grade bladder cancer in April 2023. I underwent the removal of 3 tumors followed up by BCG treatments. 3 months later another Low grade tumor was discovered and removed followed by more BCG treatment. I went 6 months clean and then another high grade tumor was discovered last week and removed. I am now at an extremely scary fork in the road. The removal of my bladder and prostate and a neo bladder constructed. Option 2 is stopping BCG & undergoing Gem / Doc chemo treatment in my bladder which I am told is a 50 / 50 proposition. I would love an opportunity to speak to patients who have had the cyctectomy / neo bladder surgery because right now I am lost..........this is all after I lost my kidney to Papillary Urothelial Carcinoma 2.5 years ago.
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Hello @mikev. Sorry to hear of your repeated bladder infections. My husband's medical team explained at the start that it takes a while for the bacterial population of the small intestine used for the neobladder to adapt to its new role as a bladder. There may always be bacteria found in a urine sample that are present now because it was a piece of gut used to make the bladder. Mayo urologists always want to do their own urinalysis because local labs may not realize the changes in bacterial population. Presence of blood microscopically can also last for a long time as well as an increased production of mucous that never seems to stop. White blood cells are present in the mucous, so many features of a UTI can be present in a daily sample. If this is your medical team evaluating a U/A then they know the difference between a UTI and the new normal for a neobladder, which a local lab may not. My husband was treated with antibiotics 2-3 times during the first 2 years postop, but he had many complications with ureter blockage, nephrostomy tubes placed, stones identified on scans, and incisional hernias.
I wonder if a good probiotic taken orally would help manage your bacterial population? Maybe a question for your medical team.
@sepdvm thank you for the response and the information it's very helpful for me thank you. My team is aware of my situation as far as the neopladder in my urologist just put me onto a probiotic this morning so if she is in contact with my surgeon and hopefully we'll get this straightened out or at least under control
Hello mgb007, my name is Charlie and I chose the Neo Bladder procedure because for my situation it was the most curative option. I had my radical cystectomy back in Oct of 2025, so I am 10 months past surgery and doing good at month 6 and last CAT I was Cancer free. I had Non-muscle invasive bladder cancer ( high grade) and I had no complications other than the 7.5 hr surgery takes a long time to recover with many steps. I was able to leave the hospital after 3 days and had a NEO bladder catheter and kidney stints as well to drain urine and give the neo bladder a break while healing. I had my tubes and bags removed at week 3 and the first few months were a challenge for sure. I avoided any UTI or any other bad complications. I now deal with finishing training my NEO bladder. At night I still struggle to get more than 3 hrs of sleep at a time but during the day I am close to normal (I void every 4 hrs and stay very hydrated 67 + oz of fluids a day 50% water) . I now see a pelvic floor PT and she said I am only at 20% strength and can take up to 18 months to get full night time continence. So I am 90% back to activities pre surgery. I can play 9 chains (holes) of Disc Golf. I go for walks and practice disc throws 3 times a week. I will have my 1 yr CAT scan in Oct and will go from there. But all in all I am grateful I had the procedure and I am happy and doing the best I can.