any 20\'s males out there with neobladder?

the only 20 something males i've seen with bladder cancer were in the military...some at camp LeJeune where the water was found to be contaminated. Here is a paper on younger males with bladder cancer.
www.medscape.com/viewarticle/405400_2
pat

He should certainly recover WAAAAYYYY faster than us. Still won't be a walk in the park though. It's a big surgery and can take 6 or more hours.

You haven't alienated me and expect probably no one else here by asking what you did. I don't know of too many people who showed up to this site with lots of information/knowledge about bladder cancer. How are you supposed to know that it is extremely rare for someone so young to get this? We understand.

We will all be pulling for him!

Mike

Thank you all for your responses, every little bit of information is helpful as we are finding there aren't alot of 20's males out there who have been thru this.

I hope by asking for 20's males, I haven't alienated anyone. I figured recovery would be quite different for someone so young, and maybe, it's just that since he is so young and otherwise very healthy, his recovery will be shorter.

I appreciate your patience and good wishes. We are terrified at the changes this might bring, but trying to stay really positive and keep in mind that, hopefully, after the RC, the cancer will be GONE!

Dear RysMomKB,

I can't emagine what thoughts you son must be going through.

I am 50 and felt to young to have the RC but Cancer knows no age limit.

My surgery was 12 hrs and robotic assisted with disection. I had a catheter and a folly drain plug after surgery. Was in hospital for 6.5 days. Up and walking day after surgury, short wlks down hallway 7 to 10 min. per walk about 6 times a day. Very improtant to walk as this prevents blood clots post surgery.

Catheter stayed in for 4 weeks at home.

Returned to work after 3.5 months recovery at home.
Pads, diapers, and matress pad are musts.

He will have to go slow with returning to full activity and will most likely have leakage. This will be less and gradually return to normal in 6 months provided he learns how to controll his muscles.

Have him practice the kikle all the time... it will help later.

As pointed out by others, they will not know if the RC will be possible until they are in surgery, so stay positive and keep praying.

And he will have a big scar, so the six pack abs may look like a 12 pack for the first year.

Good luck, my prayes are with your son and your family.

PS... I had stage3 high grade very agressive cancer.

Here is a link to pelvic floor exercises posted previously by Humpy: medicalcenter.osu.edu/PatientEd/Materials/PDFDocs/exer-reh/physical/IncontinenceExerProg.pdf .

He can actually start these exercises now and it will help him regain continence sooner.

When he gets the catheter out, there are what some of us call "man pads" that he can get as well. They help for daytime leakage. Here's a link to one kind but there are lots of brands: www.walmart.com/ip/Bladder-Control-Pads-Extra-Plus-16-bg-144-cs/9894123

When home, a mattress protector of some sort is helpful.

Mike

Mom,

Top surgeon is very important for RC.
He should chew gum (don 't swallow) as soon as he can after surgery. The gum chewing action can quicken waking of the intestines. The intestines shut down with this type of surgery and waking them up is one key to recovery and getting out of the hospital.

He should walk at least three times a day. First day, just walking in place next to the bed is ok. Then up the hall and back. Someone should be with him to walk.

Also, first day can be deceiving. The pain meds may make it seem like things are pretty darn good but then the pain can creep up on one. He should use the pain meds but not expect to be completely pain free. Keep pain under control but not gone. The reason is that the pain meds slow the waking of the intestines.

Check with his surgeon about getting an epidural for the surgery. People who do this tend to have shorter recovery times in terms of intestines waking up.

He (or somebody) is going to need to flush the Foley catheter that will be in when he wakes up. The intestine used to make the neobladder will produce mucous and the mucous can clog the catheter so it's important to flush the mucous out regularly. They will tell you how often at the hospital.

He's going to have all sorts of tubes and drains so he shouldn't be surprised by that.

They don't know for sure if a neobladder is possible until they are in there. Any involvement by the urethra may rule that out.

He should be very careful about lifting. Incisional hernias are common and it is very easy to lift to much too soon. Many of us here have had problems with (myself included).

He will be given exercises (Kegel's, at minimum) to strengthen the pelvic floor muscles. Those are the muscles that are key to continence. Given that he's younger, he may be able to achieve continence sooner than the norm because his pelvic floor muscles are likely stronger than a 40's or older male. Typical is about a month after getting the Foley catheter out. He will go home with the Foley still in and need to maintain that flushing schedule they give him

The neobladder will need to be stretched SLOWLY over time. He will have a schedule of how long to try to hold it between going to the bathroom to allow it stretch. The size of the neo will only be about 40cc or so in the beginning and the eventual size 400-500cc.

Hope this helps.

Mike


There are mixed reviews on the harvesting of sperm if chemo is required. Some chemo treatments can cause permanent damage, some can cause temporary or long term reduction in count. It all depends so the bank is probably a safer bet with the harvesting afterward as a backup.