I Need some advice from you folks. I had a scope about 6 weeks ago that showed a red spot and urine showed positive for Maligment cells. So back for another turb first one since I was cleared of this last dec 7th, Now they find some thing that is negative but urine still possitive. So we wait a month and last Monday pee test at uros office still abnormal cells. I have to get an IVP xray on kidneys in the morning and then go see Doc on Monday. He has sugested maybe 6 treatments of Mytisen, But I am leaning against it. If there are no tumers then what is the reason for it. I am so tired of getting violated. I have so liked these last 11 months of freedom. Eccept the 3 month checks with scope. Thanks in advance for any advice. Don
Sorry for what sounds like a dilemma. It occurred to me that if the cysto was clear (that's what I understood from your post, right?) and cytology positive, that yes, you should be looking at the ureters and kidneys, brush biopsy, maybe? Have you had a FISH test to complement the cytology? Might be helpful as to if the cytology is correct or not. NMP/BladderChek is cheaper and simpler and can also be done in the office to double check cytology. If they refuse the FISH there are more diagnostics, both urine and otherwise (there are pages on the main site under 'newly dxed', diagnostic tools', 'urine markers')
I would also be hesitant to treat the bladder until you are sure that there is cancer there! otherwise, the ureters or kidney would the target and the approach would be different. So no, don't jump to conclusions without a solid diagnosis (and your doctor should be of the same mind, I'm sure).
I sympathise with your feeling of repeated violation. I don't have bladder cancer, my sister does. I have breast cancer and if I had to pick....I'd choose breast cancer over bladder. Those cystos-the thought of it- but then again, I'm very wimpy. Most people here never complain about them. But I'm glad my cancer was external, anyway.
Hi Wendy: Thanks for your reply. I went to have the hole kidney exray thing done today with a cleanout last night and a contrast fluid injected today. When I go to Uro Doc Monday if all is well with the kidneys and all that. I will ask for a fish test to nail it down. Untill all this is done we will not do any treatments. I am hoping and praying there is nothing wrong with Kidneys or anything else. Thanks again From Don
Cytology can be repeated, and needs to be done before any cystos as this can mess up results. There are also different 'grades' of cells that come back with the results, and cytology can show it if it very aggressive, or mildly aggressive.
Guidelines for cytology are sorely lacking and it's common for mistakes to be made as the urine is sent out to an outside lab, and the test is also subjective like pathology is.
The same might go for FISH, that is shouldn't be done too near a cytoscopy which might give false positives= I'm not 100% sure about this though. I can find out for you if you need. It is looking at genetic abnormalites, so maybe it is not affected by inflammation...good chance.
For the record, here is the closest thing to guidelines about cytology tests that we have as of now, I received them from the author in the UK:
Urine for cytology should be the second morning voiding collected directly into a clean container. Approx 20ml is suggested as an optimum volume although smaller volumes are also acceptable for processing by the lab. Samples collected on 3 separate days may increase the chance of detecting abnormal cells.
A fixative may be used if delay in transport is expected, say over a weekend, and refrigeration at 4 degree C is not available. Collection into special fixative may be necessary for UroVysion testing.
Guidelines on urine cytology are being published by the British Society for Clinical Cytology (BSCC) and may become available in a few months. I am not aware of any other existing guidelines on this subject.
Good luck with the FISH on Monday and any decision you have to make regarding your situation - I know how difficult it is. I had a neg cysto and pos FISH. Lab documentation recommended looking for cancer elsewhere. I had previously had the IVP's and CT scans for the upper UT and all were negative. However, I followed doctor's advice to get biopsies from kidneys, ureters, and prostate (all negative also). Everything took about 5 weeks to complete and I only missed about 5 days of work during the entire period. Thinking about the procedures was definitely worse than the procedures themselves.
My advice is to just do your research and make a decision that is good for you - when you look back you don't want to have any regrets about anything you did or didn't do. It seems like everyone's experience is a little different.
Moreover, when I was trying to decide on mitomycin or BCG, I read somewhere that mitomycin should not be used in the absence of cancer. Probably a good decision to hold off here (plus there are some possible negative side effects).
Hope this helps and that all of your tests return negative - it will certainly make your choices easier.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
There are some existing guidelines at LABCORP for urine cytology. I posted them in December when I went for a second opinion at my primary care physicians office. Here is the link to that thread that tells other circumstances that can adversely affect the accuracy of a urine cytology. Rosie blcforum.com/smf/index.php/topic,598.0.html