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FISH Test Results and Upcoming Visit

10 years 3 months ago #24002 by Stephany
BM, let me think out loud here, too. Your rheumy will not treat the tests? Then why get a sed rate? I have an autoimmune disease, and did not treat it until the sed rate went up, and I have minimal symptoms. That kind of thinking is something I do not understand.

You might just call the hospital, ask for the department that will be doing the test, and ask them if you should be pre-treated. They may have a standard pre-treatment anyway, and then you can be ready if they decide to use the contrast. It's better to be ready, and the pre-treatment is not a big deal. It's better to be ready, I think.

Pat makes good sense, too. Let us know what you find out.

Stephany in Iowa

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10 years 3 months ago #24000 by BMU
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

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10 years 3 months ago #23989 by Patricia
BU...your doctor is right...it should be done in a hospital setting and really the TURB is a quick procedure and you're not out for any length of time. Does your doctor do lots of TURBS? How much bladder cancer has he seen or has the majority been prostate cancer?
The IVP and the CT scan dyes are both iodine based.....so
There is an ionic version which is has a higher likelihood of reaction and a non-ionic dye that has a much lower liklihood of reaction.
At any rate you should discuss this with your radiologist...sometimes with patients who have had a reaction they give them a pre-dose of Benedryl and steroids. But definately let them know. If they are doing the CT without contrast it won't be much help in defining what they find if anything.
Tis a quandry huh?
What about an MRI?..Thats a different contrast but also has the potential to cause problems tho its not iodine based..
Pat

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10 years 3 months ago #23987 by kathyk
Hi BM,
It sounds like your uro wants to be very thorough in his treatment of you at this time. The purpose of the TURB in the hospital is that if there is any cancer they can remove it at that time and they can get more, larger and deeper tissue for biopsy. Thus, he will be able to give you a more definitive diagnosis than if he did the cysto at the office which limits the amount of tissue removed for biopsy. I had a cysto at the office followed by a TURB at the hospital. The biopsy results were quite different. So he elected for you to skip that step. Look at it as by taking this one step you are getting two steps ahead. Good luck!
Kathy

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10 years 3 months ago - 10 years 3 months ago #23984 by Alan
Am guessing you are talking about a TURB (transurethal resection) which means he will be taking a sample or 2 for pathology. Mine had to repeat for margins to be sure. It is basically a non event-was out for 30 minutes. Am sure you will do fine. Here's hoping the FISH was a false positive for you!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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10 years 3 months ago #23977 by BMU
Hello, Here is the update on my visit to the Urologist just completed. The Secretary initially had given me the choice of scheduling the visit either at the office or at the hospital, and I chose office visit. However, when he saw me today, he said he was still debating what to do because even if he looked into the bladder in the office and even if he did not find anything, he would still have to take some tissue out for testing and that can only be done in the hospital. The positive FISH result meant that we cannot ignore it, though it is possible that it may be a false positive---according to him. After some discussion, he asked me to reschedule the appointment at the hospital. I asked him what kind of anaesthesia they would give, and he was pretty much sure it would be general. I expressed my prefernce for local, but he somehow seemed to be inclined in favor of general anaesthesia and stated that it would only be like a sleeping pill. Finally, he relented and said I could discuss that with the anesthesiologist and it would be OK with him either way if the anesthesiologist agrees.

Before the Cysto, he also asked me to undergo an X-ray of the kidneys with contrast. Earlier, some 8 years ago, I had some experience of breathlessness for some 5 minutes when an IVP dye was injected. After learning about this, the Uro changed the order to CT scan of the kidneys to be done before the cysto. The procedure itself should be done within a week of Cysto. I am yet to schedule the CT scan and the Cysto.

From what other members seemed to indicate, the Cystoscope seemed like an office procedure, but the Urologist is firm in stating that he would not do it in the office. This sounded rather odd, but perhaps he is being cautious. I will appreciate the assessment of other more experienced members of the forum. Do you think I should seek a second opinion at this stage or go through the CT scan and Cysto and then look at the results and decide?

Thank you,

BM

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