Hi Alan,
Thank you so much for responding. The original uro said that "visually" it looked like stage 4 to him before the pathology. When the pathology report came back saying stage 1, he disagreed and wanted to do a second look TURBT to get more samples. Which we later found out was standard procedure but he made it seem like it was out of the ordinary to do a second TURBT. We discovered that people are usually restaged and sometimes upstaged with the second TURBT. We were bracing for it to come back as stage 4 just based on what he told us. He completed the second TURBT a month later, taking samples of the original tumor site, some muscle, and some from his prostate to see if it had spread. Second pathology results came back stage 1, no muscle invasion, no tumor or cells in the prostate sample and no new tumors. He said, in a very surprised manner that my husband's bladder looked really good. It was a bit bizarre that he almost seemed disappointed that nothing else was found. He reaffirmed that the best course of treatment is bladder removal and didn't suggest BCG at all.
We got a second opinion from Dr. Piyush Agarwal at University of Chicago who agreed with pathology that it was stage 1 and that he would recommend bladder removal but he did think that my husband would possibly benefit from BCG.
I've read everything that says T1 is a "slippery slope" and that bladder removal is the only "guarantee" that it won't progress/recur but my husband feels strongly that he wants to try everything including BCG to see how that works in preventing recurrence and progression.
It was incredibly disconcerting that the original uro didn't want my husband to do BCG at all.
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