What is Life like after Bladder Removal?

Posted by ricardin2 @ricardin2, Aug 9 6:35pm

Hi,
I'm a 61-year-old male considering bladder removal for my non-muscle invasive high-grade bladder cancer. I was wondering if anyone out there has experience living with a Neo-bladder. . Looks like footballer Deion Sanders got one recently and has spoken positively about it. I"m wondering what's it's like over the long-term to live with a Neo-bladder. Any complications after 5,10, 15 years? Any feedback greatly appreciated.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

I had my bladder removed 8 years ago. My cancer was ready to break through the bladder lining which would have been game over. I was fortunate to have one of the best surgeons at Sunnybrook hospital in Toronto On. Who did a marvellous on me even removing my prostate as well that was infected too.
At first i was frightened but knew I had a second chance at life.I go once a year for a complete scan and there is no reoccurrence of the deadly disease. Wearing a urine bag is no big deal. Its better than the alternative.
My advice. Go for it. Hope this helps Foss

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Colleen
Thank you for including me in this discussion so that I may perhaps become more aware of other people's experiences as well.
It has been over 2 years since I got my neo bladder. I was originally diagnosed as t1 level but after further examination by Merke I was classified as T2. My doctor at Mayo says early stage T2 even though he judged me t1 but it was highly aggressive and after much discussion we decided to opt for the neo bladder.
So after 2 years I could report that I feel really good all in all except I have ongoing incontinence problems especially at night with mucus discharge during the day of varying levels. I am just now starting to get away from diapers and just use protective underwear during the day but still wearing diapers at night. However in the big scheme of life I judge this to be acceptable and I'm grateful that I don't have to wear a bag and I'm still alive and happy.
I have had some experiences with other people who have this ongoing treatment who have decided to try to live with the original bladder. In my case I had talked to my doctor and asked him his advice and he made it sound like I would probably have to get a bladder removal eventually even with the treatments. I know many people have had reoccurrences even with the BCG treatment. However my doctor called the bladder removal the "definitive solution" and I feel better just getting the whole thing removed along with my prostate gland. In my specific case I simply did not want to have to go back to the hospital that often any other issue is I rather have this type of operation earlier than later as I'm not getting any younger. If I was able to conquer my incontinence problem I would call it a total win getting the whole thing removed and then would have to wonder why would I want to live with my original bladder and the cancer risk. Of course we all need to make our own decisions based on our own circumstances but that is my two cents worth of opinion.

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@bajaman Hi I am just beginning this journey and have been researching the different options. I am leaning to the neobladder also meeting with my surgeon this Thursday. can i ask your age ? i am curious because of the incontinence. is more prevalent in men over a certain age ? as i am 58 . does age have a bigger factor in continence?

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