Does bladder cancer treatment continue ad infinitum?

Hi, I found that Gem/Doc worked for me when BCG didn’t.
I have been cancer free now for over a year.
I have the blue light cystoscopies & found that sometimes incontinence was actually from a UTI.
I am also in my 80s.
Wishing you all the best.

Statististics: here you go: https://pmc.ncbi.nlm.nih.gov/articles/PMC3999003.

For PT0/1/A I highly recommend utilizing TURBT tissue for Signatera and Altera and equivalents if possible. It depends on the TURBT(s) tissue volume.

This can ascertain whether it remains localized or has gone systemic. Furthermore, the longer you wait with RC, the higher the odds over time of systemic spread regardless. Due to LVI infiltration risk. Once in LVI all bets are off sadly.

When it turned out the bad stuff was in my diverticulum I dropped everything and went to Cleveland Clinic, Baptist South, University of Miami: all local or more research, reviewing slides. So I moved on. I had a private hospital in Dusseldorf Germany ready to cut it all out. Fortunately, Baptist MD Anderson agreed with immediate RC. Sadly, I would have to wait 6 weeks. So they sent me to Mayo. Mayo cut it all out the next week (after my first appointment). I was upstaged. Had I waited 6 weeks I would most likely not be here today. So Mayo (so far) saved my life! I tried Shands at University of Florida but they told me they had 2 RC surgeons left and it would be months.

I wonder why BL cystoscopy is not being used as standard care? They do not use it at CCF and I asked my surgeon to inquire. I had a follow up cystoscopy on 4/29 that revealed inflammation at the previous carcinoma site, that’s it no other inflammation. I was immediately scheduled for a biopsy resection on 5/18. The 5/18 resection biopsy was all clear thank G-D, the stars and the moon , however my bladder was inflamed. Surgeon did a full bladder scape in addition to the biopsy. I inquired about waiting another month or so after the 4/29 cystoscopy and surgeon said absolutely not “ you have high grade any inflammation must be addressed immediately “. Btw my pre surgery testing was all clear - urine great etc. I feel like I had a potentially unnecessary surgery .
I am thinking a BL cystoscopy would have avoided the surgery. Good luck and thanks for sharing your journey.

The reason is a) difficulty getting insurance to pay for it, b) paying for the equipment and material to support CysView, c) not many general hospitals employee urology oncologist who can properly do the procedure and interpret it.

It is a long 36 month schedule for treatment and maintenance. I think you have to stick with it as they recommend as long as periodic scoping indicates it is working. Introduction, 6 weekly infiltration ("I"), wait 1 month, then Cystoscopy ("Scope"). 6-8 weeks wait, then 3 weekly I, then 9-12 wks wait, then scope, wait another 0-3 weeks, then another 3 weekly I, then 3 months off. Next, the between treatment time increases to 21-24 weeks between 3 weekly treatment groupings. Ask your doctor for your specific schedule. Again, it is a long trip but, as long as it continues to work (scope shows no cancer, or negative biopsy's to any suspect spots), it beats the alternative of bladder removal.