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.

pegpal | @pegpal | Aug 21 2:31pm

In reply to @jaxfl "With PT2 RC is the default unless you want to explore TMT. Both have pros and..." + (show)

Please translate for me: PT2 RC?

jaxfl | @jaxfl | Aug 20 10:35am

With PT2 RC is the default unless you want to explore TMT. Both have pros and cons. But time is of the essence.

brianwong57 | @brianwong57 | Aug 19 1:08pm

In reply to @ricardin2 "I had a papillary tumor resected and also have CIS. Can you direct me to any..." + (show)

Best Wishes Rich, I too was recently diagnosed with High Grade papillary cancer myself and now researching non surgical options if I’m even a candidate or not?
Stay Calm and as Positive as you can be!

brianwong57 | @brianwong57 | Aug 19 1:02pm

In reply to @bajaman "Colleen Thank you for including me in this discussion so that I may perhaps become more..." + (show)

@bajaman

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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Thank you for your insight as I was recently diagnosed with recurring High Grade Papillary Cancer. Currently we are researching non surgical options first, but the cancer has already penetrated into the muscle, how far is unknown at this time. I will be contacting Mayo next week after our visit for a second opinion with the Chief of Oncology at our local hospital here in Panama where we relocated to in June 2024. Was your experience with Mayo a pleasant experience? What state were you treated in?We are looking at the Phoenix Arizona clinic. This is mentally, emotionally and psychologically challenging for me, being that in the last 4 years I’ve already been treated for Thyroid, Bladder & Prostate cancer all at the same time! God Bless you!

jaxfl | @jaxfl | Aug 18 6:40pm

BCG is not a guarantee for remission or cure. RC has far better odds. Especially with multifocal and papillary+CIS disease. High grade is a huge risk for sudden aggressive progression. Blue light TURBTs are also highly recommended for patients with CIS. Regular TURBTs miss a lot of CIS.

Retep51 | @peter51f | Aug 16 8:42pm

In reply to @tms3 "There is actually a prescribed maintenance schedule for BCG treatments when BCG has been successful after..." + (show)

Yes I was told that. In January 6 months after the last TURBT, my doctor said he will evaluate the bladder and most likely do the 3 BCG treatments. And have me back every 6 months. Unless he finds something. I sure hope he does not find anything.

jaxfl | @jaxfl | Aug 15 7:35pm

In reply to @ricardin2 "I had a papillary tumor resected and also have CIS. Can you direct me to any..." + (show)

https://pmc.ncbi.nlm.nih.gov/articles/PMC10272547/
Here you go. There are countless other articles confirming this.

I would caution against stating one is cancer free after RC. There is always a chance of future metastatic recurrence. Although, with T1 and T2, that risk is significantly lower than with T3 or T4 but obviously never zero.

Sue, Volunteer Mentor | @sepdvm | Aug 15 3:10pm

Hello @ricardin2 . My husband had a neobladder surgery at Mayo in 2021 and unfortunately suffered through many complications and procedures to correct all the issues. Since March of 2024 he has needed no more surgery, just yearly monitoring and is cancer free. His was aggressive and muscle invasive. He must catheterize himself 3 times a day but is continent through the day. He wears depends at night and used a bed pad as a full bladder is prone to leaks. He is very glad to not deal with an ostomy despite all the issues he has faced. Catheterizing becomes an easy way of life and you learn to just keep all the necessities in stock. You can find my series of comments here under my profile: https://connect.mayoclinic.org/member/00-c9c331d48a4f213880292/#:~:text=Experiences%20with%20neobladder%20surgery%20for%20bladder%20cance