Cystology and FISH before Cystoscopy?

Alan,

I noticed in another thread to someone else you said, ". I presume you have had a complete panel for exotic UTI's?"

Are you talking about something beyond the standard urine culture? If you are, I would appreciate if you could tell me the names of these tests.

Right now I have positive nitrites and leukocytes but the standard urine culture has come back negative several times. A number of possibilities, but two are that the normal culture test is not sensitive enough, or that I have an "exotic" organism that they aren't testing for.

I read something about "acid" and "gram" stains but my urologist doesn't do them.
I was going to "PM" you to keep this thread on topic, but couldn't figure out how. Is there a "PM" function on this forum?

Jim

Alan,

As mentioned, I already got the two extra tests, partly on the prompting from here, so thank you everyone. Both Cytology and FISH were negative. Probably Cystoscopy is next, but why do think it's "unusual" to have hematuria without bladder cancer?

According to my research, while hematuria is associated with bladder cancer, it also is associated with prostatitis, bladder infections, an enlarged prostate, and a large bladder diverticulum. All of which I have to one degree or another. And while my cultures lately are negative, I show positive nitrites and leukocytes which may suggest an infection just under the radar, which can also cause hematuria.



Jim

Actually he plans to use a rigid under propofol, probably because he might want to do a biopsy. I prefer a flexible with local, so I will discuss this with him before. Hopefully, since I've been self catherizing, it won't be too painful. I have had propofol several times on other procedures, and while it definitely makes things easier, there are some studies that suggest even shorter acting sedation like propofol can be associated with memory loss/dementia in the elderly. Problem seems to be they routinely give you too much which can have the same effect as general anathesia. I can attest to this as once I was sort of awake but the other times knocked out cold. So if it's really not necessary, I'll try without. I plan on getting a second opinion on the hematuria and other issues but not sure I need a bladder cancer specialist lke Dr. Dalbagni a this point as there can be many other causes for my hematuria, but we will see after the cystoscopy. But thanks for the name if it comes to that.

And sorry one other thing. I am in central NJ, I did go in to Sloan Kettering for a second opinion (my primary urologist is associated with Robert Wood Johnson University Hospital in Somerset and New Brunswick). Sloan Kettering is a "gold standard" for care. The urologist/surgeon I saw there was Dr. Guido Dalbagni, eminent doc, but there are others just as good on staff there, so yes, I would definitely pursue getting care through them for a complicated matter like you face. They are on the upper East side of Manhattan not far from the United Nations building.

Jim - good questions and I am not sure about the right protocol but I do have one suggestion for you to consider. Since things are a bit inflamed down there (in the bladder/prostate/etc.), I would ask the doctor to use propofol to knock you out when/if he needs to perform a cystoscopy. I am confident it will be with a flexible cystoscope (rigid is usually used only for TURBT) but even so, traversing the prostate can be very painful if it is inflamed. I have had this same discussion now with my urologist and other doctors as I go through several procedures including upcoming BCG therapy, and they have told me that while it does depend upon your insurance coverage to some degree, it is within their discretion to use anesthesia where medically necessary.

The analogy is colonoscopy, where you are put under using propofol (not a deep anesthesia - you are not intubated, you breathe normally, and you come out of it a few minutes after the procedure is over, feeling a big whoosy for only an hour or so). You do need someone to drive you home. Yes there is always some risk associated with being put under but there is also risk associated with being tensed up and nervous when the cystoscopy is being done while you are aware, and the doctor is also trying to minimize discomfort so he may not do as thorough a job examining you (because he is rushing); my urologist told me he prefers patients like me to be put out so he can indeed take his time and do a thorough exam of the bladder.

Being put out for the procedure makes all of the difference in the world for me. Anyway, just offering this for your consideration as something to talk to your doctor about. I am going to be put under for each BCG treatment. Good luck to you and hope everything turns out well!