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On Friday my husband who is a young 80, had the TURBT procedure after a CT scan showed a tumor. The cystoscopy after this showed one large tumor and several other smaller ones that were high grade. He had been having microscopic blood in his urine for quite a while but the first cystoscopy a year ago didn't show anything. I feel that it was missed so that in itself is extremely frustrating. It was only taken seriously when he bled into the toilet. We immediately switched doctors. One of the tumors seen on Friday was CIS so the new urologist said that there is a very high chance of recurrence. My husband has a follow up at the end of the week so hopefully the pathology report will be back by then so we know where we are heading. So far, unless there is a major change, he recommended six BCG treatments that will start after healing and then another TURBT procedure. Then there will be very close monitoring. He is surviving the catheter which he can remove tomorrow and luckily had no spasms with it this time which he had after a Urolift two years ago. I know this is going to be a change of life situation and more so because of the high grade diagnosis. Thank you for reading this!!!

Husband diagnosed with high grade bladder cancer. Has had BCG treatments and surgery to remove a tumor. Just recently informed that microscopic urine test was still positive for cancer cells. Scope indicated another tumor. Been doing a lot of reading, research etc about ileal conduit and neo bladder. Would very much like to hear from someone that has had bladder and prostate removed and which procedure those chose.

@jowilliams1
Thank you for your reply. I have seen a PT for my pelvic floor as a part of the treatments I have been receiving. She performed all sorts of tests and determined that I have no problem at all with my pelvic floor, despite my having had my prostate removed many years ago. I'm really trying to find anyone who has had an ileal conduit procedure and identify any problems, aftereffects, etc.

@spotdog I can only imagine how tired you are dealing with this. It is great to be cancer free but you have issues that are very hard to live with. I am assuming that you have tried various antispasmodic medications for the urgency issue with no improvement. My husband ended up with a neobladder surgery to remove bladder due to continuous recurrence of tumors. While he must self catheterize 3-4 times a day, he is satisfied with the outcome and has only minimal incontinence at night. It was a massive surgery with complications. He just did not want an ostomy.
You have seen this ileal conduit surgeon, but have you had an opinion from a referral to a large referral center/teaching hospital/cancer center to determine that there are really no other options than cystectomy to relieve your symptoms? Are your symptoms all secondary to the initial surgery or due in part to any of the followup treatments? A good question for your medical team or a referral doctor.

@spotdog
I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have you sought out a pelvic floor physical therapist? I have a neobladder after MIBC in 2024 and in my situation pelvic floor exercises were extremely helpful. I'm wondering if that might help.

@spotdog
I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have you sought out a pelvic floor physical therapist? I have a neobladder after MIBC in 2024 and in my situation pelvic floor exercises were extremely helpful. I'm wondering if that might help.

Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around 11/2024. I had 3 tumors that were high risk but non-muscle invasive. They were cut out and my urology group put me into a 24 month FDA trial treatment program. I've had a bunch of BCG treatments (2 remaining) as well as a year of immuno-therapy drip. While all my cryoscopies have been negative my problem has been that (1) I am totally incontinent and, (2) have to urinate about every couple of minutes (24/7) ever since they operated on me in 12/2024. As a result, I have not been able to sleep at night for around 18 months. My treatment doctor does not give me a lot of hope that I will outgrow the incontinence/constant urination once my treatment program is over. Thus, I have met with a surgeon that specializes in ileal conduit surgery and am considering this surgical option. While I recognize that having to wear the pouch would bring its own problems, I'm really ready to end my totally intrusive incontinence. Has anyone recently faced a similar problem?? I'm looking for advice and input.