Followup for Noninvasive High-Grade: Anyone chosen no more treatment?

Posted by openloc1949 @openloc1949, Nov 6, 2025

After 2 TURBTs, faced with ongoing treatment with BCG, at age 76. Has anyone opted not to have that treatment? If so, what did you do? OR, if you had BCG and are in my age range, what were the side effects?

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Well,...I had to Post Pone the 6 Treatments...These Treatments are a
"Preventive" Treatment...The Key Word is " Preventive".... Which Means Your Doctor is Recommending the Treatments...In other Words its an "UpSell"....You go an get an Oil Change,
along with that they offer Wiper Blades....Same Idea....
Everything has a Business Side and The Hospital or Medical is No Different
I Will Go Every 3 Months have my Doctor, Go into the Bladder....and Check for Possible Tumor Growth....
I Dont think I can do a Catheter Ever again,...Unless I am Put Out, in a Coma or Some other Non Awake Measure....
Right Now, I am Good, Everything is Going back to Normal....
I know What to look for, with My Urine,...Any Color Changes and I go back in...for Some kind of Testing...
"CATCH IT VERY EARLY AND YOU CAN BE GOOD....Start Guessing and Wait and think its gonna go Away....
Its Not"....

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Profile picture for daddyroxx2025 @daddyroxx2025

Well,...I had to Post Pone the 6 Treatments...These Treatments are a
"Preventive" Treatment...The Key Word is " Preventive".... Which Means Your Doctor is Recommending the Treatments...In other Words its an "UpSell"....You go an get an Oil Change,
along with that they offer Wiper Blades....Same Idea....
Everything has a Business Side and The Hospital or Medical is No Different
I Will Go Every 3 Months have my Doctor, Go into the Bladder....and Check for Possible Tumor Growth....
I Dont think I can do a Catheter Ever again,...Unless I am Put Out, in a Coma or Some other Non Awake Measure....
Right Now, I am Good, Everything is Going back to Normal....
I know What to look for, with My Urine,...Any Color Changes and I go back in...for Some kind of Testing...
"CATCH IT VERY EARLY AND YOU CAN BE GOOD....Start Guessing and Wait and think its gonna go Away....
Its Not"....

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@daddyroxx2025 The problem is that bladder cancer recurrence is very high, one the highest of the cancers. So if you had one tumor you are highly likely to get another. BCG is very effective in keeping recurrence at bay. The data is very clear, it works. So I decided to go with the maintenance BCG treatments. The catheter is uncomfortable but I’ll take that inconvenient to lower my chances of another tumor.

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Profile picture for quahog @quahog

@daddyroxx2025 The problem is that bladder cancer recurrence is very high, one the highest of the cancers. So if you had one tumor you are highly likely to get another. BCG is very effective in keeping recurrence at bay. The data is very clear, it works. So I decided to go with the maintenance BCG treatments. The catheter is uncomfortable but I’ll take that inconvenient to lower my chances of another tumor.

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@quahog I Understand that,
I just couldnt do another Catheter Session...It was the Worst Experience I Ever Went through..
IDK,...I'm Fine Now,..No Issues,
Any Signs of a Reacurrence, I will go in...

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Profile picture for daddyroxx2025 @daddyroxx2025

@quahog I Understand that,
I just couldnt do another Catheter Session...It was the Worst Experience I Ever Went through..
IDK,...I'm Fine Now,..No Issues,
Any Signs of a Reacurrence, I will go in...

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A sign of recurrence may be stealth like microscopic hematuria. Or if it breached unnoticeable for a while. By then it is very difficult and extremely time consuming.

YYMV.

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Profile picture for jaxfl @jaxfl

A sign of recurrence may be stealth like microscopic hematuria. Or if it breached unnoticeable for a while. By then it is very difficult and extremely time consuming.

YYMV.

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@jaxfl Yes,...You are Right,..
Honestly my First Surgery to Remove the Walnut Size Tumor,
Did go Without any Issues...
I did Receive the Chemo into the Bladder after Surgery and Was Drained out and I woke up to a Nurse Flushing Out the Bladder with Distilled Water....after all that,
I walked out of the Hospital feeling Fine, Until it was Time for me to Pee,..Yes,..There was Burning and Then the Urge to Pee like Every 10 minutes,...This went on till the next Day...No Sleep, Finally I Decided to go to the ER,...They had Pills for both Issues and that Cleared that Up....The Second Operation was to get a Biopsy for the lab to See if it had Spread...The Surgeon got it all +....I was Very Relieved....
Preventive Treatment was the Next Step,...After a CT scan They Noticed I had a Few Kidney Stones that had to Go...Before Treatment he wanted to make Sure there was a Clear Path for the BCG....to go Straight to the Bladder...3 Operations in 2 1/2 Months was Enough...My Penis has had Enough....I will go to my April 7th Appointment and The Surgeon will take a Look again inside the Bladder and See if anything is Going on...I am Content with this,
to See him Every 2 or 3 Months on a Wellness Check of my Bladder is Do able....Yes, He will go into my Penis with the Camera,..Which only takes Minutes....I can do that..
The BCG Treatment is a "Preventive" Treatment...The Key Word here is "Preventive"....I Received No Calls from my Surgeon or Nurses Stating this has to be Done....To me this Signals an Extra,..An "Upsell"....Its there if You want it...at This Point,...I need to get more information on this All,..
I'm not gonna Panick or Get Desparate....I am involved with the Vince Lobardi Cancer Section of a Oskosh Hospital, Along with Aurora in Sheboygan and Fond du lac, Wi....My Case is Known, and ANY SYMPTOMS APPEAR IN THE URINE I WILL ACT.....
until then,...I can't do any more Catheter Treatments....awake,...
They wanna do Treatments like this..."For Gods Sake, Put me Out"
They would do that.....

REPLY
Profile picture for daddyroxx2025 @daddyroxx2025

@jaxfl Yes,...You are Right,..
Honestly my First Surgery to Remove the Walnut Size Tumor,
Did go Without any Issues...
I did Receive the Chemo into the Bladder after Surgery and Was Drained out and I woke up to a Nurse Flushing Out the Bladder with Distilled Water....after all that,
I walked out of the Hospital feeling Fine, Until it was Time for me to Pee,..Yes,..There was Burning and Then the Urge to Pee like Every 10 minutes,...This went on till the next Day...No Sleep, Finally I Decided to go to the ER,...They had Pills for both Issues and that Cleared that Up....The Second Operation was to get a Biopsy for the lab to See if it had Spread...The Surgeon got it all +....I was Very Relieved....
Preventive Treatment was the Next Step,...After a CT scan They Noticed I had a Few Kidney Stones that had to Go...Before Treatment he wanted to make Sure there was a Clear Path for the BCG....to go Straight to the Bladder...3 Operations in 2 1/2 Months was Enough...My Penis has had Enough....I will go to my April 7th Appointment and The Surgeon will take a Look again inside the Bladder and See if anything is Going on...I am Content with this,
to See him Every 2 or 3 Months on a Wellness Check of my Bladder is Do able....Yes, He will go into my Penis with the Camera,..Which only takes Minutes....I can do that..
The BCG Treatment is a "Preventive" Treatment...The Key Word here is "Preventive"....I Received No Calls from my Surgeon or Nurses Stating this has to be Done....To me this Signals an Extra,..An "Upsell"....Its there if You want it...at This Point,...I need to get more information on this All,..
I'm not gonna Panick or Get Desparate....I am involved with the Vince Lobardi Cancer Section of a Oskosh Hospital, Along with Aurora in Sheboygan and Fond du lac, Wi....My Case is Known, and ANY SYMPTOMS APPEAR IN THE URINE I WILL ACT.....
until then,...I can't do any more Catheter Treatments....awake,...
They wanna do Treatments like this..."For Gods Sake, Put me Out"
They would do that.....

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@daddyroxx2025
The Hospital WILL NOT Put me Out...

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Sedation (full) is extremely expensive and therefore only used for cases where it is required. Sadly. If you had anesthesia every time you had BCG you could experience serious issues.

Hang in there!

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Profile picture for hotrod58 @hotrod58

@peter51f it’s like this. Life is about choices. Talk to the people you would be doing it for and get their feedback. Are they being selfish or are you? We all have faced the same question and back you no matter what you decide. I personally watched cancer take my mom in less than a month earlier this year. I was with my baby sister as she passed after fighting cancer for years. And I was with my father who had cancer pain but did nothing for about a year before he died. My path is to fight my bladder cancer. My reasons are few but this is my story and I will decide when it ends not cancer. Good luck to you.

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@hotrod58
Thank you for your words. Helped me

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