Neobladder or Ileal Conduit, unsure

I am preparing for RC in 2 weeks and have to make the decision NB or IC. I am your age, so your comments are helpful. Did you have any female organs removed at the same time? That is another decision I must make. The latter would be preventative,

Neobladder is great when it works. One downside is waking up in the middle of night for the majority of patients. Urostomy is better sleep and in most cases no training (aside from putting on the appliance).

It depends on anatomy, experience of surgeon.

Regarding female organs. I am male so my prostate is gone. You will have to consult with the surgeon and oncologist or urologist oncologist who is the surgeon.

78 year old woman here. Had my bladder removed March 2025 and opted for the urostomy. I'd had a full hysterectomy 20 years earlier, so didn't face your issue of whether to remove any female organs. I would think that's an individual risk assessment question for your gynecologist. But one other thing to consider is the risk of vaginal prolapse and whether it's increased by removing those organs. Once they remove the bladder and uterus, etc., there's not much going on in there! But pelvic floor therapy helps. And I may be showing my ignorance here, but I'd also ask if removing them requires removing additional lymph nodes; the more they remove, the greater the risk of lymphedema.

@robertconnelly
Initially I would point out that I had prostate cancer in 11/2000. It was cut out completely, but I had to radiate to be sure no cells were left. Now, 24 years later I've contracted bladder cancer and have been treated for my cancer since 12/24. My treatment program is part of an FDA test protocol. I'm now 3/4 thru the treatment program with lots of BCG's and immuno-therapy. I have 2 BCGs to go. So far, I've stayed clean. However, I've been totally incontinent since day one and have developed side effects that have resulted in my having to pee about every 2-3 minutes - 24/7. That has resulted in very little to no sleep at night for the past 18 months. I recently met with a surgeon who discussed my surgical options - neo-bladder vs ileal conduit. He said I was not really suited for the neo-bladder for a number of reasons. He advised that the ileal conduit would be the best way for me to go. No more diapers; no more having to pee constantly. et al. He did point out the potential negatives as well - use of the bag, etc. I would like to know if anyone has had symptoms similar to me and is looking at the same option(s).

I'm a 79 year old male, have gone through a lot of treatment consisting of BCGs and immune therapy. I've been totally incontinent for about 18 months (since my initial surgery to remove my bladder cancer). I've decided to have the ileal conduit surgery. I've spoken with a few folks who have gone that route, and they are all glad they did. To me, getting rid of life with soggy diapers is worth any price. Good luck.

I had MIBC at 54 and had a RC and full hysterectomy after chemo treatment (in Nov 2024). I opted for a neobladder and am very happy I did. The surgery and recovery is more difficult/longer and it took about six months for me to regain continence. I had to build up my pelvic floor with exercises every single day. It takes patience but if you know that going in then you're better mentally prepared for that challenge. It isn't an easy process but I would definitely choose it again. My neobladder functions very well (others may have to catheter at times). So that the neobladder doesn't stretch you do have to get up through the night to empty. I set my alarm. It's just part of my new normal but to me it is worth it. Good luck!!

Bladder Cancer found in January, had 2 TURBT surgeries, became totally incontinent and now. Unable to start BCG treatments. I would be unable to keep BCG in bladder. Now kidneys not functioning and have tubes in both kidneys draining urine in bags on leg. Urologist wants to remove my bladder and then ilieal conduit done. I’m so scared,confused with everything. So rather then have tubes down my leg I’ll have a osteomy bag !
Still no cancer treatment…. How were you able to hold BCG in for 2 hrs?

I apologize for my rant yesterday but I misspoke about my outcome. With the Nephrostomy tubes I have the urologist suggested removing my bladder and having Ilieal Conduit with Urostomy Bag and stoma to release urine.

@rafcer
No need to apologize. If that was a "rant" it is perfectly normal to have a million thoughts going through your head. All of this can be very stressful. Hang in there!! Thinking of you!!

@jowilliams1 Thank you for your kindness!