Does bladder cancer treatment continue ad infinitum?

Hello Bobbie;
I’m assuming at your cancer was not muscle invasive. Mine was as well as being aggressive. I remember my father having non-muscle invasive and going back and back and back for I assume it was BCG treatments. That’s not what he died of. However, the plan that the doctors had for me was very straightforward. I had chemotherapy and immunotherapy for eight weeks then I had a chemotherapy and immunotherapy for eight weeks then I had a radical cystectomy. It was a very hard time. That was February 2025 to December. I am not able to take ongoing immunology which was part of the protocol due to side effects from that drug so I have a CT every three months so far to see if there’s recurrence and I am NED so far. I don’t think I helped you with your decision but just to tell you that there are protocols that should be followed for the latest treatment. I wonder if there is one for your type of bladder cancer if so, it’s pretty straightforward.
Karen

Hi Karen @kfontaine1002

It does seem like your dad had a very difficult time and for sure - one with which we can all relate. You certainly have had your challenges as well.

It seems unusual that both you and your dad got bladder cancer; I didn't think this was an inherited condition.

The time between February - December 2025 must have been an extremely emotionally and physically grueling time. You mentioned you had a radical cystectomy but I am a bit confused. Are you currently undergoing bladder cancer treatments? Since I know nothing about medical after-care once a RC is performed, I wish you could elaborate on what sort of treatment modality you are undergoing.

You have been through so much (as all members here can relate) and I am sending my good wishes. May the road ahead be far smoother than it had been and I wish you success now that you have had bladder removal. Be well.

There is no universal law. Each patient is unique as is each malignancy. However, in large patient populations there are different pathways:
1: Low grade. Can require continuous treatment (TURBTs + BCG or localized chemo/ICI for many years).
2: High grade PT0/1 (with CIS): BCG can be attempted but risk for body-wide spread is always there (although low).
3: High grade PT2/3 (with CIS): BCG is not an option nor is localized chemo/ICI. Heavy systemic chemo (CG or DDMVAC) (+ pembro, rarely) and/or EVP. RC is the curative intent therapy in most cases. EVP is gaining popularity and for select patients TURBTs+chemo+radiation. Sadly, many patients turn out PT3 or N+ after RC. Neoadjuvant chemo as mentioned is common but fails 30-40% of patients making things worse.

Irregardless, DNA profiling (TP53, SOX4 and such) can help assess risk factor and urgency of treatment.

@deidre77, how did the fifth installment go? Were you able to raise your question about how long treatment will continue for you with your oncologist? What did you learn?

@colleenyoung
Thank you for your interest. I hope all aspects of your life are going well.

I actually had my 6th (final) BCG instillation this past Thursday. Following both my 5th and 6th treatment, I had bleeding for a while and then it stopped. I developed right side pain after 3rd, 4th, 5th and 6th time. As with previous after effects, I had urinary incontinence for a couple of days which prevented me from going outside.

My urologist scheduled a cystoscopy in a month to check. I have this sense that somehow this BCG regimen will not circumvent new tumors from surfacing. I hope I am wrong.

On a lighter note, I was surprised when my urologist enters the room where I am now in a gown and ready for my treatment --- with a cd player. He announces "today is your graduation" (from 6 sessions of BCG). He then begins to play the familiar college graduation song. Goodness, gracious! I immediately began to smile as I listened. This, needless to say, was the highlight of my last visit for a while and he wished me "good luck".

I am physically exhausted and spent a good part of the day yesterday sleeping. Perhaps a younger person fares far better than I having these collective BCG sessions.

At any rate, I will see what comes next.

My doctor told me that if I wished, he would send me to a hospital for the blue light cystoscopy since I had mentioned this. I actually declined because I felt I did not have the energy to enter a new facility and all which would have been involved in the process.

Soooo - in a month I will see what the standard, white light cysto reveals (Oh...I hope, hope, hope it shows nothing!).

Wishing all members continued hope and rays of sunshine and joy in their lives.

I strongly suggest blue light if you had CIS. CIS is tenacious. And very dangerous over time. All the best.

I’m also 80 and have had a total of 12 BCG instillations over the last year after a TURBT to r3move a single NMIBC, labeled Ta, high grade. Follow-up cystoscopes showed no reoccurrence and we have stopped further BCG maintenance because of increasingly difficult side effects and what appears to be reactive arthritis. Normally the protocol would have been six more instillations over the next year. You might want to consider the Blue Light exam. First it’s done under sedation which makes the whole thing easier particularly if they find something to biopsy and second it is very good at highlighting areas of concern that would be missed by simple cystoscopy and CTs. Bladder cancers have a high rate of reoccurrence and I think you need to take every opportunity to reduce that threat. Good luck.

@jaxfl and @quahog -
Concerning blue light cystoscopy, thank you very much for your posts and wisdom which is appreciated.

After reading extensively about BLC, I see it has been in use since 2010. Since it offers far more advantages over the standard white light method, I have decided to call my urologist later and request that he refer me to the appropriate doctor/hospital who utilizes this method. I had an appointment to have this done in his office (with standard white light cystoscopy) on April 16th but I now realize the change is important and necessary.

It would be foolish of me for not wanting to proceed merely out of inconvenience and extra preparation (new urologist, new setting, etcetera). True I am so worn out by these six BCG treatments but this is no excuse for not doing what is in my best interest.

Wishing you and all members success.