1. < Bladder Cancer

Bladder Cancer: High grade

Posted by barneythe2nd @barneythe2nd, Apr 21, 2018

I have been diagnosed with high grade bladder cancer, with recommended bladder removal. I would like to know whether the odds of survival are high enough without such drastic surgery, which has been defined as quite risky.

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

bubbablue | @bubbablue | 1 day ago
In reply to @nana2three2025 "I am hoping someone who has never been NED AFTER EVERY ROUND OF BCG..6 rounds oh..." + (show)
@nana2three2025

I am hoping someone who has never been NED AFTER EVERY ROUND OF BCG..6 rounds oh dem doc intravesically..going on 5 th Turbt since oct 2023..high grade. Papillary. Surface only in bladder..no laminated invasion….so I want to try this before I remove my bladder..hopefully someone has a successful story to tell…..

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I hope for some feedback as well

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jaxfl | @jaxfl | 1 day ago

Discuss trials and the adstiladrin just mentioned. Also ask on BCAN (Inspire), Reddit and Facebook.

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vax20071 | @vax20071 | 1 day ago

How did it go, just been diagnosed with T2 highly invasive muscle cancer and have been recommended bladder removal, which I’d like to avoid

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djr5 | @djr5 | 1 day ago
In reply to @nana2three2025 "I am hoping someone who has never been NED AFTER EVERY ROUND OF BCG..6 rounds oh..." + (show)
@nana2three2025

I am hoping someone who has never been NED AFTER EVERY ROUND OF BCG..6 rounds oh dem doc intravesically..going on 5 th Turbt since oct 2023..high grade. Papillary. Surface only in bladder..no laminated invasion….so I want to try this before I remove my bladder..hopefully someone has a successful story to tell…..

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My low grade NMIBC was found December 2023. I had the a TURBT in January 2024, one intravesical treatment of Mitomycin and then six BCG treatments through the spring, I was in remission by June 2024, then the doctor discovered high-grade NMIBC with CIS in January 2025, for which I did not have surgery, but received Adstiladrin in March and then again this month. There is no evidence of cancer as of June 4, 2025.

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1 reply
deb2024 | @deb2024 | 1 day ago

In 2023 I was diagnosed with high grade non invasive papillary bladder cancer. Had 3 BCG treatments but started to have complications with this so went on the Gem/doc treatments for a year. Had 1 tumor to recur. Now on maintenance & will have another cystoscope in 2 months. Adstiladrin is a new drug that sounds very promising…has your doctor recommended this?

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1 reply
deb2024 | @deb2024 | 1 day ago
In reply to @deb2024 "In 2023 I was diagnosed with high grade non invasive papillary bladder cancer. Had 3 BCG..." + (show)
@deb2024

In 2023 I was diagnosed with high grade non invasive papillary bladder cancer. Had 3 BCG treatments but started to have complications with this so went on the Gem/doc treatments for a year. Had 1 tumor to recur. Now on maintenance & will have another cystoscope in 2 months. Adstiladrin is a new drug that sounds very promising…has your doctor recommended this?

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I just saw your update…

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deb2024 | @deb2024 | 1 day ago
In reply to @djr5 "My low grade NMIBC was found December 2023. I had the a TURBT in January 2024,..." + (show)
@djr5

My low grade NMIBC was found December 2023. I had the a TURBT in January 2024, one intravesical treatment of Mitomycin and then six BCG treatments through the spring, I was in remission by June 2024, then the doctor discovered high-grade NMIBC with CIS in January 2025, for which I did not have surgery, but received Adstiladrin in March and then again this month. There is no evidence of cancer as of June 4, 2025.

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Did you have side effects from the Adstiladrin?

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1 reply
edge41 | @edge41 | 1 day ago

I was diagnosed with high grade bladder cancer that is in the muscle wall and close to the prostate. Both have to be removed along with two lymph nodes.
The cancer is aggressive so I will not chance it.

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1 reply
djr5 | @djr5 | 1 day ago
In reply to @deb2024 "Did you have side effects from the Adstiladrin?" + (show)
@deb2024

Did you have side effects from the Adstiladrin?

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Yes, I had fever for several days following each treatment, muscle ache and now become fatigued more easily.

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jowilliams1 | @jowilliams1 | 3 hours ago
In reply to @edge41 "I was diagnosed with high grade bladder cancer that is in the muscle wall and close..." + (show)
@edge41

I was diagnosed with high grade bladder cancer that is in the muscle wall and close to the prostate. Both have to be removed along with two lymph nodes.
The cancer is aggressive so I will not chance it.

Jump to this post

Sorry to hear this but I believe you're wise to just move forward and get those organs out of there. I was muscle invasive aggressive as well. I had a RC in November. Things are looking good so far for me. All my best to you!!

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