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I have high grade non-invasive bladder cancer. First dx'd a little over two years ago. After surgery, because BCG was in such short supply, I did chemo - gemcitabine and docetaxel weekly for six weeks and then once a month for a year. Following the surgery and through the year, I was clear of cancer. Then went to once every three months cystoscopies for ten months. All clear until the last month. The cystoscopy looked clear and the surgeon said we would go to once every six months to test. But a couple days later the cytology came back showing high grade urothelial carcinoma cells. So back to surgery for blue light surgery. Showed CIS cancer(s). Doc recommended a clinical tiral - Legend, which is immunotherapy and gene therapy. Intravesical like the chemo. I finished the first cycle of four treatments a month ago and went for the scheduled cystoscopy just a few days ago. It showed areas of concern. I drove nine hours home to New Mexico and almost as soon as I walked int the door I got a call from Mayo asking me to come back for a biopsy next Thursday. So off again. I'm worried I will now be disqualified from the trial. Doc had said I could still try BCG if the trial doesn't work, but it's still in short supply so they're giving half doses. Internet search showed half doses are quite successful. So I'm in limbo. I would like to avoid the bladder removal, but if that's what I have to do, does anyone have any opinions or experience with reconstruction versus bag? I read the Deion Sanders had reconstruction and so far has to wear Depends and keep close to bathrooms, but that his brain may train the new bladder to respond better. Does anyone know if sex becomes a thing of the past with either or both of the bladder removals? What is overall quality of life?

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Replies to "I have high grade non-invasive bladder cancer. First dx'd a little over two years ago. After..."

I have had NMIBC since 2012, had BCG a bunch, and gemcitabine too, and just got booted out of a study because I showed no improvement.....nothing has worked completely but all the stuff worked a little bit. I have a preop on the 29th.....my bladder might be getting the boot......so just keep in close surveillance, keep doing the treatments they come up with, and the docs will let you know when its time.....best of luck.!!