I really have to thank all of you so much. Here's what's happened today. My waking up at 4 AM was such a blessing because I saw all the posts and started into action mode rather than shock. My husband has an appointment for next Monday, the 2nd with Dr. Shandra Wilson. Her office has already received the faxed records from his Dr. in Boulder. He did have the surgery at the hospital under a general. We also have not ruled out MD Anderson. In fact, some other really good news is that our insurance would cover MD Anderson under our standard coverage (I think with some mention of depending on the treatment which didn't surprise me). I really did all this before the poor man even woke up- I wasn't sure what his reaction would be but thankfully he had progressed in his thinking to the action mode as well and he was very grateful. I had him read all your posts, then read Dr. Wilson's bio and at that point he said "we need to call her and see if we can get in" and I was able to say "you have an appointment next Monday and they are calling as we speak to get your records".
So here's what we are thinking at this point:
- see Dr. Wilson on Monday. I am hoping and assuming she may do some additional testing. It just seemed odd to me not to do a chest xray, full body CT or something, additional blood work, etc... If she agrees with the staging and grading (something I am still confused about...) and the treatment plan, then we would decide whether to drive down and do the BCG with her or not. If she thinks the staging and grading is understated (that is a concern to see your statistic there Pat!) and thinks he should skip the treatment and go right to the cystectomy, we would hear all the options. But I think then we would see ourselves on a plane to Houston to MD Anderson to see what they say. Does that make sense to you all? Of course, we both agreed that we wouldn't want to spend too much time on running around, particularly if Dr. Wilson would have a different opinion (which we would see as more bad news if she thinks it was understaged).
Bambi