Yesterday I emailed Dr. Steinberg, who did my surgery in Chicago, summarized my incontience and sleep problems due to the stricture (the excessive scar tissue at the base of my neobladder and the urethra). I also mentioned how my local urologist had tried to reopen the stricture by forcing a series of catheters through, but was reluctant to cut or cauterize the stricture due to concerns that it might increase the incontinence issues. Dr. Steinberg promptly responded as follows:
I typically incise any
scar tissue in the urethra under cystoscopic control in the operating room. I
don’t think that dilation in the office is effective. . . . I think that there is
more scar tissue, bladder neck contractures in patients treated with neoadjuvant
chemotherapy and that a direct vision internal urethrotomy appears to work best.
I will copy Drs Schoenberg and Bivalacqua to see if they can help you. Otherwise
I would be happy for you to come to Chicago. It is an outpatient
procedure.
Dr. Steinberg copied the Hopkins doctors (Schoenberg and Bivalacgua) on the email, and they quickly responded and said that they would be happy to take care of this. This reinforces what I already knew, but had disregarded because of proximity: when dealing with bladder cancer and neobladders, go to the doctors who specialize in it, which probably eliminates 99% of urologists.
This procedure hopefully will resolve the problem with the stricture. I'm not sure when it will take place, as I am waiting for it to be scheduled. Knowing how these things work, they will put a Foley catheter in for a few days -- not something I look forward to, but I'll get through it again.
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