I too presented with T1G3, had 6 TURBTs and 34 treatments of BCG, Mitomycin C and Gemcitabine over a 2 1/2 year period. The tumours grew back, not every cysto, but most and finally went muscle invasive. I would personally not consider cystectomy unless muscle invasive occurred, but some do with recurrent T1G3. Knowing now what I do following my cystectomy, I would personally resist it as long as possible. But not all feel the same way and I respect that. I never found the treatments all that bothersome so I guess that helped me want to continue that course as long as possible. But I did follow my doctor’s advice which is key; if you can’t do that, it’s time to get a second opinion – which I also did at the muscle invasive stage. The uro’s I have spoken with prefer the maintenance route where possible and tolerated as long as there is no muscle involvement.
Greg
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