any 20\'s males out there with neobladder?

Thank you Bill and Mike for your replies. We have the big meeting with his doc this coming friday and a list of questions to ask. We have a really great cancer doc who has been guiding us, but is not treating my son. He's just in an advisory role.

My son has two small children, but we have discussed the sperm bank issue, and diapers so far. We are really lucky to have a great relationship and can talk about most anything. Granted, I am mom, so I'm sure there are limits at some point. I appreciate the timelines; just to have the most basic idea of what to expect. He is very young, and otherwise quite healthy and strong, so hopefully, that will hasten his recovery.

He's really looking forward to just getting the cancer OUT and gone. As has been explained to us, as long as there is a "host" the bladder cancer will continue to return. It came back this time, bigger and faster, and since last time it was 150 grams, his doctor says the tumor cannot be safely removed; it takes up the entire bladder at this point. Too much risk of tumor spillage - so RC is the only real option. We appreciate any helpful hints, tips for care after the procedure when he's home and just general advise from those of you who have been there.

Thnak you!

RysMomKB,

On the wanting children side of things that Mike talks about, my doctor gave me a brochure for any future thoughts as this was something my wife asked about. Along with making a deposit, they can harvest any time after the surgery. It looks and sounds brutal, but I guess it works and only takes a few minutes for the procedure. Don't overlook the subject when talking to the doctors.

Good luck with the surgery, and if you guys have any questions here, just ask away!

Bill

Mom,

You aren't going to find a lot of 20 somethings here with an RC because there aren't that many 20 somethings that get bladder cancer.

Only 25! That REALLY sucks. I guess it sucks at any age but 25 sure is young for this disease.

So, recovery time varies greatly with this surgery. A 25 year old is certainly going to recover faster than most just because of his age. I was out walking the day I got home from the hospital. Not far, but I was outside. I was working from home (have laptop, will work) in a week. My doctor had me on travel restrictions until mid-December (my surgery was 8th of Oct) and I had complications which caused me to have a 12 day hospital stay.

Average time in the hospital is is around 5-7 days but it could be less for him. My grandson (9) just got his appendix out a couple weeks ago and he was sent home in less than 24 hours!! Took me 3 days when I was 15 and got mine out!

Getting his bladder out now offers the best chance for a long and healthy life. Bladder cancer has a very high recurrence rate and getting rid of the bladder before it can get elsewhere is the way to go.

The nerve sparing surgery for the prostate removal is very important. Make sure the doc is A+ in doing that part. The prostate is removed when they take the bladder and it controls erections. Not sure if he has kids or wants them in the future, but he may need to make a deposit at a sperm bank because post surgery there will be no ejaculate. Not sure if the doctors have already talked to him about that but if not, he should ask. Rather than me explaining all this to his mom, it would be better if chats with his doctor about what prostate removal means.

Hope all goes will with the surgery!

Mike

Hello RysMomKB,

I'm not 50 yet, but I can tell how long things took and what my doctor said to plan on time wise. I was in the hospital for six and a half days, she said seven to ten days. Stomach and bowels took about six weeks to get back up to speed, told six to ten weeks. Lots of gum and walking really speeds up the process.

I was told about three months for recovery and able to return to work, sooner if there was no heavy lifting or standing for long periods. For radical cystectomy, incontinence issues will be how well your son follows through with retaining his pelvic muscles with kegel exercises and breaking in the new bladder. Plan on pads and diapers for maybe a month in the beginning.

There are so many questions so don't be afraid to ask and take notes. If his cancer has been caught early, things should go pretty well for a long time. Just be sure to get a surgeon that has done a lot of RC's, the more experience, the better the outcome.

Bill

Thank you! I will check out that section!

Thank you for taking the time to respond. Surgery has been scheduled for June 2, and we are very lucky to have a urologic oncologist at UCSD here in San Diego working with us as well as a second opinion guy at USC. Next appointment is May 6th to go over the surgery, options, potential outcomes and all the other info they think he will need for a great recovery.

My son is otherwise, a very healthy, strong young man, so we are hopefuly that once the cancer is gone, he will go on to live a long full life and be able to enjoy being cancer free.

It's good to hear from others who have had the procedure and are going on with their lives!