[BobinNJ]

I had my RC in April, after 3 months of chemo. I had leaned toward the external bag because of fears about incontinence with neo-bladder, and because pre-chemo that appeared to be the only option. But the chemo shrunk tumor enough for a neo-bladder and the surgeon convinced me to go for it. I am so glad I did. I am 99% back to normal. I have full continence during day and only an occasional small leak at night- and even that is getting better.
Assuming it’s medically advisable, and done by a surgical team that is very experienced, I definited recommend neo-bladder.

[BobinNJ]

Had neobladder done in April at MSK in NY. Doing great: full continence during day, only occasional small leakage at night.
Good Luck!

[BobinNJ]

Hi Karen,
Just letting you know we will be praying for you. The post from Linda was excellent and I can’t add any more to it. I can tell you that I had my neo-bladder done at MSK back in April (surgeon Dr Bernard Bochner) after 3 months of chemo there (oncologist Dr. Dean Bajorin) and it has gone extemely well. MSK is outside my insurance network, so we are stuck with some very large bills – though of course not as bad as having no insurance.
The original urologist I saw was also excellent- don’t know about what insurance coverage he might accept. He works out of St. Clares hospital in Denville. Dr. Marc Colton (www.morrisurology.com)
Regards,
Bob

[BobinNJ]

Jeff,
I have the neo-bladder, which means completely remove old bladder and build a new one out of section of colon. All “plumbing” is hooked up as natural – no external bags or ports. I urinate thru penis, as before.
Daytime full control came very quickly for me. Night was a little longer, but as of now (2 1/2 months after operation) I only occasionally have a little leakage at night- and even that is minimal.
Best advice I can give is get a Doctor and facility who does lot’s of these procedures. I was able to get a great doctor (b. Bochner) at Sloan Kettering in NYC.
Bob

[BobinNJ]

I had my RC on April 25, preceeded by three months of Chemo. The chemo was effective in reducing tumor enough that they were able to do full neo-bladder, which at first did not seem like an option. All done at Sloan Kettering in NYC- can’t say enough about how great the hospital, doctors and all associated were thru the whole thing.
Now my recovery is ahead of schedule- I’m fully continent during day and almost so at night. At night I wear a pad and get up 2-3 times, but with only occasional leakage. No restrictions to my activity.
Best advice I can give is find a Doctor who does a LOT of neo-bladders, like 40-50 per year, not just 2 or 3.

[BobinNJ]

thanks Linda, very helpful summary, right in line with what i’ve already learned.
Currently have 2 chemo treatments left after today (getting treatment as I write). Sisplatin, Gemcytobean and Pacitaxol. (did not check spelling) Tolerating fairly well, with worst symptom being fatigue.
Surgeon is saying that since cancer has spread to top of uretha, I am probably not a candidate for the full neobladder. So either the external bag (my less desireable) or continent pouch with stoma (leaning toward this) are my choices.
I currently have a neprostomy from my right kidney to a leg bag (or overnight) since cancer is blocking right ureter, so I somewhat familiar with that device- and would prefer something “better.”
What concerns me is the presence of the stoma- which seems to me to an ongoing source of infection. It seems infection is a very common source of ongoing problems, occuring in 100% of the people I’ve connected with so far- though admittedly a small sampling. I spent a week in Hospital myself due to infection. So I guess my main question is how successful – with minimal complications, is this procedure? I’m looking mostly for anecdotal reports from people who have this diversion. Also any other insights – I’ve read some contradictory stuff about catheter tubs needing so be sterile/single use, etc.

Bob