The Board of the ABLCS has elected the late Mike McGarry as Board Member Emeritus. His example to us all in survivorship and bladder cancer advocacy was deemed by our board to be the standard our organization should always strive to exemplify. By electing him to this perpetual position on our board we hope to never forget the path he has paved for us.
David, In the material Patricia linked to it said that the FISH test could pick up cells several months before a tumor would show up. My husband had a positive FISH test and the Dr. did a retrograde pyleogram and ureterscopies and did not find anything hence he said I can\'t treat what I can\'t find.
The difficulty was later CIS was found in his ureters. Having the cancer go upstream to the ureters and kidneys happens but most of the time bladder cancer is in the bladder.
There are false positives but I don\'t know the percentages I think they are low.
I think your urologist is right and needs to investigate further.
I know it gets wearing to have to have the TURBTS that often but you really don\'t want the bladder cancer to get outside of the bladder. Please let us know what your urologist decides.
Where are you being treated. I see you are in Houston?
I had the opposite response to FISH test. A little over two years ago, my results to the FISH test showed all clear - two months later I had CIS. I would like to think we caught the CIS very early, and the FISH test did not miss it. After 2 years of BCG I am still clear, but of course I worry every time the FISH tests say \"clear\".
I would difenitly, follow up on the positive results, maybe a second opinion?
Patricia, Julie, Warren, Nancy and other who\'ve been in this thread:
Sorry about the tardy response, but Thanksgiving and all the trimmings happened.
My uro is quite concerned about the 2 Postivite FISH tests in a row and considers me a \"high risk patient\" in spite of the fact that the last 4 TURB\'s have turned up no new CIS or even papillary tumors.
I have a Retrograde Pylogram plus a TURB scheduled for Dec. 11. I\'d have to say that I\'ll be surprised if anything is discovered (maybe I mean that I hope not). He wants to check for what are called \"filling defects\" in the lining of the kidney, where urine formation occurs, which may indicate some type of cancerous growth in those areas. He has no reason to expect their presence, it\'s just that\'s what has been observed in similar procedures I suppose. Maybe some of you have more experience and knowledge in this area?
As always I appreciate all your experience and information.
I had the TURB and Retrograde Pylogram this morning and everything went smoothly. The retrogram did not indicate any filling defects in the kidneys and we\'ll learn the results of the \"cold sponge\" kidney biopsy where he took swatches from several areas - trigone, left right, top, bottom, etc. next week, but the doc did not see anything to cause concern. The lining of my bladder is, however, VERY prone to inflammation and bleeding -- just injecting water in order to examine causes the tissues to stretch and bleed.
Then of course there\'s the mystery of the 3 consecutive positive FISH tests that has my Uro doc scratching his head. Yes, a second opinion COULD be in order, but what could be tried that has not already been done? All the cytology tests have been negative.
Have another pathologist look at the FISH tests. Responses can vary from one to another.
And i do know of one person on this forum who had CIS which was not discovered until after cystoscopy..it was hidden between the inner layer and muscle layer.
Not want to frighten you..but do have someone else read the tests and maybe get a fresh perspective.
Got the biopsy results on 12/18 from the 12/11 TURB: no cancer from the five tissue samples, just \"atypical cells\" which the urologist says is better than \"dysplasia\" which I had a year ago. That\'s good news since I am completely intolerant of BCG and MMC, therefore the doc has said if cancer returns he will move toward radical cystectomy.