I understand what you mean. I had the expensive tests also. They didn't find anything but I know I had bladder cancer at the time the tests were coming up negative (because mine was a recurrence after two years of all clear reports).
The tests don't always come back positive when they should. There are both false positives and false negatives (yes-even the expensive tests).
In any case, he has been diagnosed. University of Michigan is a great place. I don't know the names of the surgeons there but I'm sure someone does. I think a couple/few people on this site had their surgery there.
7 years 8 months ago - 7 years 8 months ago#37926by anxsis
Let me clarify...he's had blood in urine for 10 years, so he's been seeing a urologist for many years and having regular tests, cancer screening and exams. He had just had the really expensive cancer tests and the exam, and he had rec'd a clean bill...no cancer. Lab report said no cancer. That's what gets me. His exam and lab results showed no cancer...not suspicious, not T1...none, zip, zilch, none.
Then, he had more than usual blood a 10 or 15 days ago, so he returned. Out of the blue, just 30 days after receiving lab and exam results that showed no cancer, he rec'd dx of t2.
He went from zero to t2 in 30 days or less.
To me that suggests that either the exam and tests (plural) all missed it or his is so aggressive that it did go that fast.
My guess is that the first test just missed it and it didn't go from nothing to T2 in 30 days. I had clean cystos (even when I was having intermittent blood in the urine) but the cytology finally showed something and that was the indication it had come back for me. Cytology also doesn't always show it when it's there.
When I went from my urologist to the Univ of Colorado hospital to the bladder cancer specialists, they spotted it right away when they went to explore and take some random biopsies.
I really don't think that the cancer changed that fast; most uros
do a second TURB exam to be sure that they found the true situation; statistics have shown that bladder cancer is understaged much of the time...which is why the second exam is done. Your brother's urologist was "right on" to do the second to be sure that he had the correct diagnosis...the second time he knew better exactly where to do his biopsies.
In my case, the first TURB showed low-grade papillary, but the
second also found CIS....which is high grade.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society