Neobladder or Ileal Conduit, unsure

Forgot to mention I’m relatively healthy with no other health concerns.

The many oncologists I met told me neo has a higher chance of recurrence. Also many never become continent. And many experience other issues. IC can also have issues like hernias. I opted for IC and in my case it did allow me to get adjuvant DDMVAC a month after RC. Which was indicated after upstaging.

Add signatera after TURBT and before RC if possible. It can guide treatment decisions.

My radical cystectomy and hysterectomy was done robotically. Six small incisions and literally no pain. I was discharged with Tylenol if needed after four days in the hospital. I even asked my surgeon the day after the operation if he really removed everything we had talked about because I felt great! I chose the conduit for a number of reasons. Prior to my TRBT, I had become increasingly incontinent with painful spasms, not sleeping for more than an hour at a time for two months before the TURBT removed a 3 cm tumor. Everything got worse after the Turbt,I couldn’t imagine continuing with that after the cystectomy. My new surgeon explained the pros/cons and I felt conduit was the best solution for me. I don’t regret it. Attaching an overnight urine collection bag allows me to sleep 8 hours! Changing the bag twice a week is easy. I have traveled by air and was working out several times a week until my cancer came back this year and I started treatment again. I had an easy cystectomy recovery and was ready for necessary chemo in 6 weeks. The only problem I’ve had with the bag is very recent with a rash under the device that is being treated with a foam applied during changes. My care team also works with phenomenal ostomy nurses who were a tremendous help.

@141emp , also strongly advocate use of Signatera test. Peace of mind and early warning if cancer is back.

I’m a male 57 yoa and had a radical cystectomy in Feb. 2025. I went with a neobladder. My surgery was robotic plus an open incision that lasted 14 hours all inverted. I was off work for 7 weeks and traveled to Portugal in late May. I have since traveled twice nationally without issues. I had no other health issues but the recovery was tough (the toughest being 4 weeks with a catheter). I feel 100% now without any limitations and do not regret the neobladder decision. I hope this helps in making your decision.

Hello @mstanhello, my husband elected neobladder and had multiple complications for 2 years after his open surgery at Mayo Clinic in Rochester. He is finally done with surgeries and hernia repairs and is still cancer free. He must catheterize 3-4 times daily but this has become the new normal. Despite everything he went through, he would choose neobladder over a stoma again. Not everyone has such a tough time but the odds were just against him I guess. It is a tough decision to make for sure.

Thank you all so much for sharing your experiences. I’m getting closer to a final decision.

It’s somewhat puzzling to me how I made the decision fairly easily and quick to move forward with RC but am struggling with which urinary track restructure to choose….

I’ll keep you informed of what I choose.

Thanks and well wishes to all!

@mstanhello
It sounds like your attitude is great! It's a big choice. At first I leaned toward the conduit but decided on the neobladder after I felt I had the best surgeon locally to do the neobladder. Even though he prepared me mentally for all of the things that might be challenging, I had full confidence in him.
You'll be okay either way you go if you have a good medical team you can depend on. All my best!

@mstanhello I’m in the same process right now looking at all the options. My surgeon said the neo is kind of like a corvette, sporty but higher maintenance where as the conduit is like Toyota Camry; dependable/reliable low maintenance.
I’m an active 67 year old me and my wife exercise HIIT, strength, bicycle etc. 3-4 times week, love to travel, motorcycle trips etc. With my reading, it seems like the conduit allows me to continue all these activities with little trouble and as I continue to age, if someone needs to care for me, it will be a simple process.
If anyone has actual life experience, I’d love to hear about it.

Love surgeons who can lighten a serious conversation! Guess I’m a Camry girl ;-). This has been my experience as well. The only problem I’ve had is very recent with some rashes underneath the device, possibly related to the padcev /Keytruda side effects. Continued incontinence, the potential need to self catheterize and inability to get a good nights rest were the main reasons I did not go with neobladder. My surgeon offered both. I wasn’t very comfortable with what might happen if I couldn’t train my pelvic muscles to urinate. I am 64 and became very active at gym doing functional strength training and walking after I finished my first 6 cycles of chemo in August 2024.