I thought it might be useful to raise some diagnosis and treatment issues I'm trying to find answers for.
Regarding diagnosis, as I posted in another discussion, I think testing for abnormal cells in urine, as well as several other promising tests reported on in this website (BCAN), ought to be standard.
It took a couple of months, and symptoms of excruciating pain felt in the tip of my penis after voiding, as well as unmanageable urgency mistakenly treated as UTI (urinary tract infection), before I was referred to a urological nurse practicioner, who had the good sense to give me a test for abnormal cells. The particular symptoms were brought on evidently by eating ice cream and other rich foods (that also brought on gout), but the presumption is that I also had BC.
All the important information (=details) I've acquired about Stage, Grade and recurrence have come from BCAN and BCWebcafe.org.
My urologist and the National Institutes of Health and American Cancer Society (and other sources) did not provide the detailed information I needed to understand BC and treatment options.
My urologist said (over the phone--there was no printed material on Stage or Grade, even in the pathology report) that I had T0 (Transitional Cell Carcinoma in Situ, non-invasive) or Ta (Papillary tumors). Today, the nurse who administered my second BCG instillation gave me a pamphlet that listed three types of bladder cancer. The pamphlet also stated that one can have more than one kind. This was the first I had heard of this. Now that my urologist as returned (or will shortly) from vacation, I can resume asking him many questions, including how the Stage and Grade were determined, and how accurate they might be.
As for Grade, I think I've read that CIS is always considered 3, because of its reputation, but I sure would like to know if that was confirmed with a microscope.
As for treatment, on the BCwebcafe.org website, an article by Dr. Lamm states that his studies showed that one percutaneous (under the skin) application of BCG along with the usual 6-week instillation increased the success rate from 70% to 84%.
An article in the BCAN website states that a study showed that Mytomycin C administered with BCG was more effective than BCG alone.
Clinical trials have shown that a dye and light combination (phototherapy) are effective if BCG fails. I think one of these trials is going on now, in Buffalo, NY.
A 2005 study (reported in the BCAN network) showed that dye + fluorescent light during revealed more tumors and resulted in less recurrence than with white light. I intend to discuss these studies with my urologist. One would think every urologist knows about these studies.
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