Welcome to the site, the peeps here are great and always willing to help if they can.
I am 62, former Marine with 68 and 69 in Viet Nam. [anget orange? don't think so]
anyway, I like to golf. My knee was bothering me so I took some ibrubrofen before we went out. When I had to urinate, it was brown. No doubt. I went to urgent care, got looked at, no problem they could find, gave me some antibiotics and told me to see my doctor. Of course I did not. A few weeks later the same thing happened while golfing after taking some ibuprofen. I called my nephew who is a cardiologist and asked for a referral.
I had two tumors that the doctor removed. I tell you this story so that you can realize that there may some cause, and then, perhaps not, just an anomoly in your cells.
The surgery is not difficult and the follow up, BGC [or BCG] is an ounce of prevention type treatment to stop or delay regrowth.
Read and learn, you have a step up on most, it is probably early, like mine. We are lucky in that respect.
Sounds like you are doing the right things. I've never heard of FISH test for blood. I don't think you need to brace for more bad news with that test.
It could be that you wound up catching this "potential" bladder cancer early. If so, that's a good thing. Finding out later doesn't give the same options for treatment. There are LOTS of options, depending on if it's just in the bladder lining or gone into the muscle wall. I believe Johns Hopkins is rated number 1 for bladder cancer according to US News and World Report, so that's not a bad place to try.
I only had negative FISH tests for a while (after my first round of bladder cancer) and then had a positive which showed it was back.
Don't panic (doesn't sound like you are) and read what you can on this site and others in order to educate yourself on the options for treatment depending on what is found in the biopsy.
I would want the X-ray and CT done prior to the biopsy. I'd do the visit to the cancer center after the biopsy and you can then bring all of the results so you and they will have a good picture of what you're up against.
Best of luck! Keep in touch and feel free to ask anything.
We've been there/done that and were helped by others here on these message boards and are happy to give back by helping others.
Sorry you had to join the club, but since you're here: Welcome, keep good records of every test (get copies of them all from everybody you see), and be active the decision making.
Here's a good article on FiSH cytology
As for FISH and blood draw i'm at a loss......never heard of it. I've certainly had blood drawn to detect any weird abnormalities which might alert the doctor to something going on....?
Glad you're pursuing setting up appointments...its sometimes faster to call their number direct rather than trying by email...that system is a bit slow.
Campbell also excellent..has also worked with Dr. Gill laproscopically.
Good luck on a speedy appointment. I think your personal physician is giving good advise.
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.