To neobladder or not to neobladder, that is my ?

And here's another wife and caregiver, chiming in on the choice. We had a surgeon for my husband who was very experienced. He recommended the Indiana pouch, for a number of reasons that aren't relevant to you guys. I am VERY glad that he did, because the cancer has metastasized, and if he had a neo, it would be very difficult for me to care for him as well as I do.

And there are times I wish, and he wishes too, that he had the external bag, because it would mean easier care when he is sick, from chemo or infections. When he is well, and able to get around, it's not so much a problem.

When he is hospitalized, the nurses aren't always able to cath him, and that can be a problem. Even after I pointed out his stoma to a nurse, she still reached for his penis with a catheter in her hand! Boy, would he have been surprised...

Stephany in Iowa

Mike on the Bike, you may want to look under the invasive section for more on the subject from mmc. It is a few weeks back.
Sam

Hi Mike,
Realy do hope you are well. I live in Englands green and pleasant land (well it would be if our Gov't stopped messing about) and was recommended to this site. I got my diagnosis this week but kind of expected the worse. I'm in the same situation to you ref: To Neo Or Not.

You are the first chap I've encountered so far with the same dilemma and if you'll excuse me for saying I'm kind of relieved not to be alone with the problem.

I have the same concerns as you and am trying to weigh up the risks as regards the procedure(s), continence, quality of life and maintenance of the kit. I still don't know what to choose, neo or bag. Everyone over here (that I've met/chatted to) seems to have a bag and sing its praises so I'm kind of leaning that way at the moment. The surgeon I'm using here is top notch (speciality is gender bending) and he wants to go neo. I'm late 50's, very active, still want to work, still want to use motorcycles (and leathers), still want to play golf better, still want exotic holidays, still do all the things I did when I was 20 years younger and generally grow old VERY DISGRACEFULLY. So, nothing new there then. I recognise I'm gonna have to compromise on some of this stuff but some are more important to me than others. I'm going to list out all the options then see if I can get informed opinions for neo and bag and kind of put a risk assessment down for each. Add up the totals and bingo, well hopefully a clear winer will emerge.

Only thing is, I have to decide by mid next week.

Would be real interested to hear if you have mad a decision and why and any advice you might have for a poor old Brit Cousin.

Cheers and best of luck, Mike

Again, thanks to all for the great information. Both positive and negative experiences are what I'm looking for.

Lorrie: Just had chest xray and an IVP done a few weeks ago, PET scan yesterday, CT Urogram today. I wanted everything scanned because, as you said, you want to really be sure before making a decision on this.

Thanks!
Mike

I don't know if I should jump in here or not.

My husband was diagnosed in Feb. of 2007- tried the scrapin, then BCG tratments, then more scraping. They ASSURED us that the cancer was confined to the bladder, NOT in the muscle, ABSOLUTELY no other involvment, & that the bladder had to come out. Because of his age, 61, & general good shape (diabetic), a neobladder was recommended. Our daughter who is in the medical field did some research about the 3 methods & felt that the stoma on the belly would have been a better choice but the urologist said " that's so old fashioned-we don't do that anymore" " this is the cadillac of surgeries- if I didn't think he would be cancer free, I wouldn't do it".He had the surgery on Oct.2/07.Long story short---only 2 WEEKS LATER, after a serious blood infection where we nearly lost him, "surprise- the cancer spread, there are nodules in the lung"

Well, it's gone from bad to worse.Bob has ,maybe a year to live.

Bob is totally incontinent! This is almost a year later!The Dr. thinks he has scar tissue in the penis, He says he could fix it but given the prognosis, doesn't want to. He has a hernia (about 4in. sq.). Again, given the prognosis, they don't want to operate.He is in constant pain. He wears diapers & Depends guards. He uses fabric quilted bedpads- 4 per night. Quality of life is non-existant.He has had uncountable UTI's,& 4 readmissions to hospital

The cancer spread to both lungs & is inoperable. He has been getting Chemo but the courses of treatment are constantly interrrupted because of other issues.

Constipation has been a real problem (hence the hernia)- he takes stool softeners, laxatives, fibre, & a million other things- it's not unusual for him to go 10 days without a BM

I saw the other glowing reports about the neobladder, I am happy for these other men. My advice would be to BE SURE ABOUT THE CANCER- GET PET SCANS, CT SCANS & ANY OTHER SCAN YOU CAN THINK OF BEFORE YOU COMMIT

Regards, Lorrie

I'm seven weeks post-neo bladder surgery and am a satisfied customer. The neo bladder words just like my old one and I'm starting to develop accurate intuition for when I have to go during the day. (usually every 90 min for safety's sake.) I've been 100% continent during the day since the foley catheter was removed 4 weeks ago. Night time continence is not expected for a while but is manageable with depends and an alarm clock or an external male catheter (texas condom) which allows me to sleep through the night without having to wake up. Like others have written, this will improve with time.
Like George, my stomach has has taken much longer to adjust than I would have thought. I still get fairly regular stomach aches and have yet to venture back into eating certain foods like tomato products or spicy food. Keeping it plain and simple has been the best strategy there.
My doctor and his collegues strongly recommended neobladder because I'm only 39 and the chance of recurrance is very high with any other treatment. Pathology reports post-surgery have determined that I'm cancer-free.

Hope this is helpful. Good luck.