First, thank you to each of you who responded and shared experiences or recommendations. This forum continues to be a lifeline of encouragement and information to me and my wife.
We saw my urologist Thursday afternoon and discussed where we go from here. It has been five weeks since my second (and final for now) MMC treatment and the bleeding and burning continue. In his words, my urine specimen was "horrible" (orange in color from the blood). He's clinging to the possibility that my continuing problems stem from a severe and very resistant UTI. Otherwise, he says he's out of options, which prompted a lengthy discussion of radical cystectomy options, should it come to that. From my readings on the forum over the past 18 months I already know most of what he said but my wife did not since I have not wanted to make her worry. I suppose that it was for the best that she got to hear all this directly from my doctor, not doled out a little at a time from me. This doc only does the ileal conduit since he does not have time or experience for the neo bladder or even Indiana Pouch options.
My uro has repeatedly told me that he has never seen anyone react the way I have to both BCG and MMC. We did talk about the possibility of reduced dosage of BCG and perhaps we'll try that next. However, given my history of bad reaction to instilled chemo, it does not look promising.
All of this brings me to the decision we may be faced with as soon as Monday: do we continue on down this road of cystoscopies every three or four months, followed by TURBT's to scrap and burn off papillary tumors --- OR --- do we start looking seriously at RC?
Last night I read through some postings from members who had RC and Neo Bladders. The results are mixed, ranging from very satisfied to downright miserable.
So, if the bladder cancer remains low grade, what to do....?
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