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

Thank you for sharing that... It is so very hard to make choices, even when we have good Drs... My prayers go out to you for success from treatment as well as peace of mind. 🫂🙏

My husband had BCG treatments for highly aggressive muscle invasive bladder cancer. He had minimal side effects and did this at the age of 69-70. Unfortunately during the BCG maintenance his tumor recurred and a trial on Keytruda was also a failure. Adstiladrin was not yet available so he opted for radical cystectomy with neobladder. He is cancer free but it was a huge surgery and long, long recovery with complications. He would have continued with BCG if it had been successful for him.

I am 74 years old and have been treated for non-invasive bladder cancer with 2 TURBT and removals in the office, as well as 12-15 BCG treatments (I forget exactly.) It will have been 18 months since a tumor was found when I have a cystoscopy in a couple weeks. The BCG treatments caused burning when urinating for a few hours and made me a bit more tired. I am feeling blessed that BCG has worked for me and that my side effects have been manageable. Unfortunately, this is not the case for everyone. I take Tylenol and pyridium after releasing the BCG, (following holding it in my bladder for 2 hours and rotating my body every 15 minutes). I hope your treatment is successful, whatever you and your physician decide is best for you.

@allenshirl I haven’t heard of the Adstiladrin treatment and am wondering what this entails.
I have had the BCG treatment which didn’t work. Then 6 weekly Gemcitibine/Doxecetal treatments which then showed that cancer was cleared. I have now just taken the 2nd maintenance dose and finding it harder to take than any of the others I have had previously.
Would love some information on the Adstiladrin.

https://www.adstiladrinhcp.com
It is a traditional vaccine like method to stimulate the immune system to kill malignant cells.

Very expensive so if you are DOCE/GEM responsive getting it approved is an uphill battle unless you cannot clinically continue.

@jaxfl Thankyou so much. Unfortunately it is not yet available in Australia where I live.
So I am having the Gemcit/Doxe treatment presently.

Also successful! Hang in there! One day at a time! I have relatives in SA but visited AU only once for a few days only.

Hello openly 1949,
After a TURBT, I was informed that I had bladder cancer and was recommended to do BCG
treatment. At first I wasn't told for long this would be necessary. Being 85, I had the same questions as you. What for, I'm older than dirt!! My urologist, whom I have great trust in, convinced me to give it a try. That was in 2024. I have now had the series of 6, and 3
series of 3. I start my next series of 3, in 01/2026, wait 6
months and if the cystoscopy
is clear, I get a full year reprieve. Was it worth it? HELL YES !!! I'm still breathing and taking nourishment! It wasn't a walk in the park, but I
learned to grin and bear it. I overcame extreme alcoholism
and have now been clean and sober for 38 years (something
only my loyal wife thought was possible)! I want to live!! My
urologist showed me how, and my wonderful wife had my back, so we all did it. Just give it a try --- bet you won't regret
it. Hang tough!
85yosk8r

@85yosk8r, speaking of tough, you sound like you have a tough will to thrive! 38 years sober and bladder cancer, and I believe in another comment you said you had Lyme from a tick.

Enjoy the holidays. I hope you can enjoy family and rest as you prepare for the next round of 3 BCG in 2026. Is there anything about starting BCG that you wish you had been told before your first treatment?

Hello Colleen,
Thanks for the good wishes! I do hope you have a good holiday season also. This is going to be an especially good season for my wife and I, because we are retiring!!! After retiring from 30 years of teaching and coaching, and my wife from legal work, we started a small manufacturing business making pallets and crates for the slate and stone industry and a local high-end lighting company. Been wanting to sell out for a few years unsuccessfully (no one seems to want manual work anymore) and we finally found someone willing to continue the business!
As for your question, I have a great young (to me) urologist who solved my pee problem with the "Green Light" treatment meant to decrease the size of my prostate. She also then discovered my bladder cancer and recommended the BCG treatment. Between her explanation and Google, my wife and I were pretty aware of the mountain we needed to climb. Having just recovered from Lyme, Anaplasmosis, and Babesiosis in late 2022, which required a nasty cocktail of medications, I figured just one medication would be tolerable! Actually, other than my bladder telling me I have to pee constantly, I have luckily had no major issues with BCG! I think my bladder is just getting even for the abuse!!!
I realize that I am probably luckier than most with the fairly easy time I had with this treatment, but all I can say is IT WAS WORTH IT!! We can't predict the future, but my motto
(which I learned from a very wise sponsor 38 years ago) TAKE ONE DAY AT A TIME
85yosk8r