Bladder Cancer Group: Introduce yourself and connect with others

@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.

@jowilliams1

@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 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.

@deidre77 Thank you so much! I really appreciate your nice comment.

@talltxlady
I wish you good luck and success with your scope.

I hope all is well.

Best wishes.

Still no cystoscopy! My doctors office called and canceled my appointment. Said the doctor had an emergency and couldn't be there this afternoon. I'm supposed to be rescheduled for 1 week from today. I will give you all an update then. Peace Love and Prayers

I am Mike, after a cystoscopy turbt for a stage 3 invasive bladder wall tumour in September 2024 a course of chemo followed. August 25 had another tumour removed followed by a course of 20 doses of radio therapy. January 26 a further cystoscopy revealed a small tumour non invasive .Now on a BCG course started April.

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.

Thank you so much @kevinpm . Of all things I mixed the date of my appointment up! It's today. I'll update y'all later when I return this after. Tysm for your comment 😊