I think Pat is right that a CT scan without contrast is not of much diagnostic value. I did suggest to the nurse that I would like to be pretested, but she went and checked with the Uro and came back saying that he ordered CT scan and declared, "let us not take any chances." I had no chance to voice any opinion about it beyond that (The office is crowded and there were running an hour late on everyone). I do not think that I will even see the radiologist at the hospital---perhaps only the technician and I guess he/she or will simply say that they cannot change the doctor's orders.
If I go to some other uro at this time, I will probably have to wait for at least 2 or 3 weeks to get an appt and I do not think he will go ahead and do the Cysto in the first visit so the overall wait is probably more like a month.
I do not know how many cystos he has done, but from what he told me, he has seen two FISH positives and one of them turned out to be negative (showing inflammation and no cancer) and the other showing cancer. He summed up saying the test is very sensitive, "perhaps too sensitive," so we need to know what is going on. He is MD and Board certified and is one of the two uros in a small town. Sometimes he is so busy you have to wait for an hour for the appt and sometimes there is hardly anyone in his office and you can go ahead of the appt time, so I cannot say for sure how many he has done.
At this point, I am debating if I should go ahead and let the nurse make the appts at the hospital for the pre-cysto and for the cysto? Or should I try to send him a fax to get him to change the orders for CT scan?
Finally, perhaps these are perhaps dumb questions, but I will ask anyhow:
(a) The clinical picture now is that there is no blood in the urine (as tested by the Hemastix strip---even during the Urologist's office visit) four times in a row in the last 2 days, there are no symptoms (no backpain, no frequency of urination). The FISH test is the compelling reason to go for cysto. Are there are any risks of increasing the chances of cancer by going in for Cysto? For example, could the nick or scraping inside the bladder to collect tissue be a breeding ground for additional growth that was not there in the first place? Is there a chance that this scratch will act like a seed around which a tumor could form (assuming the overly optimistic scenario that there is nothing to begin with)?
(b) Is it the standard and well-accepted protocol to do this as a two-in-one or is it a viable alternative to go in once for looking inside and if there is no growth or tumor (however unlikely), leave well enough alone and not take any issue out?
(c) I have RA for which I take Enbrel. My Uro said this is all the more reason to check for malignancies because Enbrel does suppress immune system. However, I remember what my Rheumatologist many times said in the past: he would NOT treat the test results, he would only treat the patient, and emphasized that I should not put much store by the test results for Rheumatoid factor and sed rate---but let him know if have any pain in the joints or other symptoms so that he can pay attention to it. Would the same logic apply here? If so, should I wait for a clinical presentation rather than go by the FISH test results?
I am just thinking aloud. Thank you for listening. Will appreciate any comments, reactions, alternate points of view.
BM