Thanks to all of you who responded and help me put this problem in perspective and appreciate the stakes. Accordingly, I have submitted request for appointment with both Cleveland Clinic and Johns Hopkins. If possiblle, I shall try to secure an appt with either Dr. Schoenberg at Johns Hopkins as the first preference and Dr. Campbell or another urologist at Cleveland as the alternative. From what I have read, it appears that Dr. Schoenberg and Dr. Campbell are both highly competent Urologists; but if they are not available, I guess I will choose whoever is available at the clinic.
In the meantime, I tried to get the X-ray with contrast/CT scan done locally so that I can take it with me when I get an appt and avoid further need to do it there. However, my local Uro ordered them as a combo package with cysto as the outpatient procedure, and his office is trying to tell me that I should do both of them together locally two or three days apart. So I consulted my primary care physician and he suggested, like most of the members here, that I would be better off going to a teaching hospital and getting another opinion. He also prescribed the X-ray with contrast as well as another FISH test to see if the result is stable or showing any random variation.
However, this time around, I was surprised to see that there were two samples drawn---both blood and urine. Apparently, there is a FISH test for each of them and this is something I did not know earlier. The local Uro did only the FISH test on the urine, not on the blood. It is not clear what the FISH test results of the blood sample will be useful for in this situation. [Perhaps for cancer in blood. Should I brace myself for more bad news ahead!!]
I am curious if any of the other members had any experience with the stability of the urine FISH test results---whether they tend to change or remain pretty much constant before any intervention. Also, have any of the other members had the FISH test of blood done, and if so, was it of any diagnostic or treatment value?
As I wait for the appointment, I will appreciate any other comments, suggestions, or insights.
Best regards,
BM