I would welcome the chance to ask the urologist about his track record if only I could ever get in touch with him! We are in Dallas, Texas and originally had decided to go to MD Anderson when we thought the urologist felt my Dad was too old for him to perform the surgery. We saw an oncologist here who started the ball rolling to be seen at MD Anderson but after more than a week, we still had not heard from MDA either. I sometimes think the waiting is the worst part.
Evidently the urologist found out that the oncologist had recommended MDA because, lo and behold, the urologist actually PHONED my Dad late one Friday evening to ask why Dad had decided to go to MDA. When my Dad told the urologist that he felt he had no other option since the urologist didn't seem to want to operate on him. the urologist's comment was "well, I will close my office for a day to do your surgery" or something to that effect. In my opinion, my Dad felt pressured to let this guy do the operation simply because the urologist put him on the spot by surprising us with a phone call. And the fact that we had not heard from MDA yet didn't help the situation.
As for stage, I'm sure it has been staged, but I'm not sure what it is. I only know that it has spread to the prostate and all doctors seem to believe it is an aggressive form of the disease that seems to be confined to the urinary tract tissue (lower part of the bladder and the prostate.) The thing that bothers me most is that the pathology reports keep coming back as INCONCLUSIVE as to whether the cancer has invaded the muscle or bladder wall. He has had several CT scans that have shown no other spread of the disease. I'm not sure why the urologist doesn't want to do bladder sparing procedures first and treat the prostate with chemo or radiation. In my opinion, the uro believes it is only a matter of time before the cancer invades the bladder muscle/wall and removing it is the prudent thing to do.
We have a physician friend who expressed his concerns about MDA to my Dad such as having to travel to Houston for followups when you don't feel very well and what do you do if an emergency happens at home and your doctor is at MDA? My thought is that people from all over the world go to MDA so they probably are used to dealing with these types of concerns. Although I know it is probably not possible, I wish some doctor could tell us how much time we have before the radical cystectomy has to be done. I read somewhere that 12 weeks from diagnosis to operation is the maximum time for successful outcome. He has had two TURB procedures. Doesn't that count as having done something?
I'm scared about the magnitude of this operation and what the recovery is going to be like for my father. My Mom is a young, active 77-year-old but Dad has already expressed concern over her having to bear the brunt of his aftercare. Reading the posts on this forum are helpful, but I must admit, do little to alleviate my fears. It is nice to know that others have made it through, but there don't seem to be any posts from folks anywhere near my father's age.
Thanks for the advice about picking up your own test results. Dad had a CT scan with and without contrast done last Friday as he had been coughing for over a month now. I will suggest that we go get the results ourselves. Since this cancer diagnosis, his every little ache and pain and cough and sneeze scares me to death as my imagination runs wild with possible causes. Has the cancer spread to the lungs causing the cough? Has it spread to the brain causing the double vision? Of course, I keep all this to myself and pray that my Dad doesn't think that way. After all, all the scans have been clear.
We are still waiting to hear from the urologist about a surgery date. And the waiting continues.....