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What is Life like after Bladder Removal?

Posted by ricardin2 @ricardin2, 6 days ago

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.

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jaxfl | @jaxfl | 3 days ago

BCG success rate is around 70%. DOCE/GEM is an alternative. There are also other trials. Plus IMFINZI has been approved in combination with GEM-CIS as neoadjuvant prior to RC.

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Retep51 | @peter51f | 3 days ago

While I cannot tell anyone what to do about going to a Neo bladder. You need to do what you think is best for you and with your doctor. I would get a second opinion before I would do that surgery.

For me.
I had the same bladder cancer and had the BCG treatments. My doctor did discuss with me the possibility of going to a Neo-B after the 3rd surgery. I told him I want to do everything possible to avoid getting the bladder removed. Luckily my last checkup and biopsy showed no signs of cancer. We shall see how long this will last. I will get a second BCG treatment in a couple months. Doctor said it is cautionary treatment just in case of any cancer cells are present. I totally agreed to do that.

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buri | @buri | 3 days ago

Hi mate,
Can I ask you please.
Is it because bcg treatment was not successful?
Non muscle is usually controlled by bcg?
I did my second one this week.

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ricardin2 | @ricardin2 | 4 days ago
In reply to @jaxfl "Many patients do fine long term with neobladder. Some have complications. Some have recurrence. Many never..." + (show)
Profile picture for jaxfl @jaxfl

Many patients do fine long term with neobladder. Some have complications. Some have recurrence. Many never become fully continent but manage that within reason.

I would focus on the near term personally and not obsess about the future. Nothing is guaranteed.

There are support groups. You can check BCAN and their forum (Inspire) for more insights.

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Thanks so much for the feedback!

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jaxfl | @jaxfl | 4 days ago

Many patients do fine long term with neobladder. Some have complications. Some have recurrence. Many never become fully continent but manage that within reason.

I would focus on the near term personally and not obsess about the future. Nothing is guaranteed.

There are support groups. You can check BCAN and their forum (Inspire) for more insights.

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