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
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.
For those of you who did not read the entire four pages on the medscape link I sent here is something at the end of the four pages that tells that cancer in other parts of the body were detected through the fish test. EERIE I ciopied and pasted it below. Rosie
Worthy of mention is that although UroVysion was initially approved by the Food and Drug Administration (FDA) only for bladder tumor surveillance, it was recently granted FDA approval to be used as a bladder cancer screening tool in patients with hematuria. There were 113 such patients identified during this study who were excluded because the focus was on surveillance patients only. These 113 patients had no history of UC but did undergo UroVysion FISH owing to various complaints such as hematuria, painful urination, urinary incontinence, and/or frequency. Of these patients, 31 had FISH-positive results; of the 31, 17 had newly diagnosed bladder carcinoma. The estimated sensitivity and specificity of UroVysion FISH in this screening setting were 62% (95% CI, 32%-85%) and 77% (95% CI, 67%-85%), respectively, which is similar to the 67% to 68% sensitivity and 78% to 80% specificity reported in the multi-institutional trial leading to the FDA approval of this assay as a hematuria screening tool
Another notable finding is that a positive UroVysion FISH result can be observed with non-UCs. In our experience, we have observed positive UroVysion FISH results in 2 bladder primary adenocarcinomas, 2 bladder primary small cell carcinomas, 1 bladder primary squamous cell carcinoma, 1 rectal adenocarcinoma invading the urinary tract, and 1 renal cell carcinoma that invaded the renal collecting system. Although no controlled studies have been performed, this observation suggests that UroVysion could detect other carcinomas that can shed malignant cells into urine. In fact, aneusomy of chromosomes 3, 7, and/or 17 has been reported in other histologic types of bladder cancer, prostatic adenocarcinoma, colonic adenocarcinoma, and renal cell carcinoma.
UroVysion FISH is an excellent adjunct to ThinPrep-based urine cytology, with the capacity to detect recurrent UC before cystoscopically visible lesions can be identified and to resolve equivocal cytologic findings. Furthermore, 26% of cystoscopically negative patients under surveillance for recurrent UC had a positive UroVysion FISH result, and in approximately 65% of these patients, recurrent UC developed within 29 months. However, caution in relying on negative FISH results must be exercised in patients with involvement of the upper urogenital tract and with certain rare variants of UC that may not shed diagnostic tumor cells and, therefore, may escape detection.
I emphasize completely with you ......You can read my long story but suffice it to say I am T1 Grade 3 and also “scared to death” as in a few days I go back to Memorial Sloan Kettering in NYC to see if my two turb’s and the BCG worked,,,, In the meantime I have been taking oncovite, selenium, garlic, and pomegranate... It helps a little ---psychologically anyway...
Anyway at MSK I am seeing Dr. Herr who has a great reputation even if a somewhat questionable bedside manner ( he won’t spend too much time with you...etc.) but to see him you must be diagnosed as having the C word first.
My advice from what I have read is to find out whats up ASAP but I don’t know enough to advise you as far as biopsies are concerned but I do wish all the best possible outcomes to you
Charles, Urovysion is another name for a FISH urine test. Often times a FISH test will be positive for cancer without there being a tumor viewed. In many cases it is a prediction that a tumor will appear. In some cases it is just a false positive. http://www.medscape.com/viewarticle/551682
Tell us more. Have you had a prior tumor and this was another follow through check up or is this the original test and surveillance because blood has shown in your urine. If you have had a diagnosed tumor before, what type and grade was it? If you have not reading the info linked here may help in your decision. Of course those on this forum who have had invasive tumors will encourage immediate further and invasive testing. I understand that and would be the same if under the same circumstances but I have and continue to have low grade recurrences and take a wait and see what develops attitude rather than more invasive type tests. I have also wondered about there being some type seeding when there are cancer cells present in the bladder and they cut to the muscle for biopsy purposes. It seems now that the one dose of mitomycin being used within an hour after many TURB procedures, it may be the agent that is destroying those "seeding" cancer cells. Rosie
Charlie I would definitely get another Urologist/Oncologist and get another opinion on this matter. You don't want anyone poking at your bladder b4 you even know the stage and to me something just does not sound right here get that other opinion, Best Wishes, Joe
Sorry to welcome you to our club.
I had hematuria for 2 months before I had a cystocope in Dec 2006. The scope found nothing. The hematuria continued, I found another Urologist and had another scope in January 2007. I was stage 2 when he found it. I wish the first urologist would have offered to do a more invasive cystoscope. Please persue diligently getting to the source of the hematuria. for your sake. By the way, I had a negative CT scan just 12 days before they found the cancer.
I think this doctor is smart about it. I also think yuou are best off to get it found and treated as soon as possible. We will help you There are great folks here who really care. I came here rather distressed and I was soundly and compassionately guided to help getting thru this. Bless you, Holly