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Bladder Cancer Group: Introduce yourself and connect with others
Bladder Cancer | Last Active: 13 hours ago | Replies (518)Comment receiving replies
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.
Replies to "Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around..."
@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.
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@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.