Thank you everyone for your responses. This is giving me hope. If I elect to go to OHSU,this would be my third urologist and final change. I want the best care I can receive and feel the university may provide a team approach, which is what I'm looking for. I know I need to get with it as my diagnosis was confirmed 10 days ago and my urologist is kind of pushing me. I'm not sure if my insurance will allow me to go there,particularly after changing urologist twice now, but I am planning to call today to confirm.
I just feel that the DR is very busy and doesn't have a lot of time to spend with me. The first one referred me to a colleague to do the biop without any pre-op consultation, which concerned me, so I got a referral from my new primary care physician to the second urologist that I'm currently with. He performed the biop and briefly explained options. When I asked how many stoma surgeries he has done, he didn't really give a solid number but I felt this was his personal choice. He did not mention having done any bladder reconstruction, which now after conferring with him, I'd like to explore as well. We did speak of a bladder spare and he said he would have a radiation oncologist contact me yesterday, which he never did. The other issue I felt uncomfortable with was I asked to speak with any current or former patients and he said, "I have one who had removal about six weeks ago". I was hoping he could provide a small list of folks who are in the world, living with there change.
The diagnosis is confirmed, now I want someone who will explain my options and help me make the right choice for me. I need to feel confident in my care and get moving. I have not felt that emotion from the professionals I've seen. Seems more like an adversarial relationship....not good I believe.
Let me be confident in my care and I will take it, hook, line and sinker.
Please help
Joe