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Still undiagnosed thoughts?

1 year 11 months ago #52630 by sara.anne
Hey there! Slow down!!! You haven't even been diagnosed with bladder cancer and you are worried about a cystectomy? No way.

I do understand your feelings. Something is wrong and you cannot help being worried. A thickening of the bladder wall is not the usual way that a tumor shows up. And FISH tests are notorious for giving false positive results, which is why they are used as a additional test, not a primary diagnostic test. Your urologist is right in being skeptical, since none of the other tests strongly indicate bladder cancer.

Your urologist does seem to be determined to help you find out what is going on. IF it were bladder cancer, it would already have been there for a long time and a few extra weeks to get this testing done right will not make a significant difference.

All the information on the internet is very useful, but it can be intimidating at times. In your case, some of it is very premature and most likely does not apply. Your symptoms are not the most typical for bladder cancer...which does not rule it out, of course. Please try to be patient (easy for me to say I know) and let your urologist do his job of diagnosing what ever it is that is causing your symptoms.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 11 months ago #52629 by kjay
For the past year I have been having copious diurnal,and nocturnal enuresis requiring diapers. I am only 39, and I have had several MRI's and Cysto's that have shown nothing. In June, I had a positive FISH test for 4 cells showing polysomy, however my urologist dismissed the results, as my cytology was negative. I have recently been experiencing instances of micro hematuria, and small black fibers in my voided urine, in addition to bilateral bone pain in both of my legs, (whereby the non contrast leg MRI was negative). I just had a CT urogram with contrast which indicated the following: The mid and distal right ureter are not visualized. There is a punctate focus of enhancement in the right renal cortex (0.1 cm) (believed to be a possible angiomyolipoma), and thickening of the anterior superior bladder wall on the delayed images is at the upper limits of normal (3 mm). Otherwise, the bladder is normal. Mild prostatic hypertrophy and calcification. I know that "we" are not Doctors, however what are the thoughts here? I just had a cysto in September that was "normal", could a cancer grow by January to cause focal wall thickening? Is OAB causing this problem? My uro wants to schedule a blue light cysto, however he cannot see me until March. In a worst case scenario if a Cystectomy was performed, would it be possible to attach the ureters to the urethra and render me incontinent? Personally I find that diapers, or a condom cath would be easier that a stoma, bag, or indwelling catheters.

Thanks,

Kjay

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