Last month I had a CT scan and a cystoscopy after finding blood in my urine. Apparently the CT scan was negative as well as the cystoscopy, but a Urovysion test of urine in my bladder showed transitional cancer cells. Now the Urologist recommeds a cystoscopy under anaesthesia while he taps the kidneys for urine samples and does what he calls "random biopsies of the bladder wall. I am as apprehensive about this procedure as I am about what he will find. It seems to me that if you have cancer cells present in the urine and you cut into the bladder for random biopses, what's the chance of making the situation even worse?I have tried calling leading Cancer centers for help. The most common response I get is that I have to have a diagnosis first for them to give a second opinion. But I feel the step I'm on is an extremely important diagnostic procedure and I want to know of a world class diagnostition to work on me.
Have any of you found yourself in a similar situation. How did you handle it. Does anyone know of a great diagnostion. I'm in Massachusetts but willing to travel.
Thank you for any help you can give. I'm scared to death as you well know
Hi Charlie,
Don't panic, as the situation could turn out to be more favorable than you expect.
Your doctor sounds like he is taking the correct step by suggesting cystoscopy under anesthesia as a rigid scope shows more and maybe he can see what is in there without needing to do random biopsies. In your case, it's necessary to rule out upper tract cancer if nothing else is seen.
Sometimes the FISH/Urovysion test picks up low grade tumors, which may be too small to be seen. Cystoscopy is not 100%, and can miss things sometimes. The fact your doctor used the FISH test tells me that he's using cutting edge tools. This is not a standardized test yet, though, and still experimental, most doctors don't know how to use it correctly. Did you have a regular, standard urine cytology test as well, and was it positive or negative?
Sometimes FISH shows positive when cytology is negative because FISH is better for detecting low grade (and as Rosie's article pointed out) or rare tumor types.
Random biopsies are pretty standard in a case where cytology (or FISH or other urine marker tests) is positive but no tumor is seen. There is a rare form of bladder cancer that is often invisible, called CIS/carcinoma in situ, and random biopsies should be able to diagnose this if it's there. It's important to rule out CIS as it's a dangerous tumor that needs treatment.
There is a new experimental approach that improves the detection of cystoscopy, I wonder if your doctor uses it, it's called "Hexvix", photo-dynamic diagnosis (PDD), and is in phase III clinical trial around the USA. It uses a dye that lights up the bladder and shows tumors that would otherwise be invisible, especially CIS. It's not toxic and does not use cutting. I suppose he doesn't have it or would have offered it. Maybe he can refer you to a place that is using it.
Rosie mentioned that new guidelines recommend a dose of chemo within 12 hrs to prevent re-seeding. I'm not so sure that's the best route for a person like you who doesn't have a diagnosis yet, but if your doctor offers that option you can discuss it.
Good luck,
Wendy