This is the first time I have posted on this website, but have mined it for useful information. I was originally diagnosed in March 2006 (in a large urban setting with a good cancer center) and had 1 tumor removed - Ta,G1. First cysto 3 months later was negative. I then accepted a new job in a medium sized city 400 miles away from another large urban area (and another good cancer center). Just before leaving my last job in Sep 06, I had a positive cysto (surprise! 4 tumors) and my doctor was kind enough to perform a TURBT before I left my previous position. I arranged an appointment with a urologist in my new city as soon as my new insurance kicked in (60 days - I took the chance without COBRA - last time I do this) and did not miss a 3 month check up. A cysto revealed more tumors. My urologist confided that he did not see bladder cancer too frequently in this part of the US, but assured me he had worked in larger urban areas. I had 11 tumors removed in Jan 07, post-TURBT MMC (for the first time) and have undergone 6 weeks of BCG.
At my first cysto (negative) after BCG my doctor took a FISH sample, which came back positive. Since then I have had biopsies on prostate, ureters, and renal cavities - all negative. My doctor does not know what to think and my research suggests to trust the cystos at this point. I am also on a maintenance BCG protocol. I trust my doctor and I have not had any second opinions - although my doctor works in the same office as his wife (also a urologist), thus, I get 2 for 1. Has anyone else had experience with positive FISH results and negative cystos?
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
A fellow bladder cancer warrior and I have been in touch for 6 years. He reported to me that his FISH test showed positive but nothing showed on the cysto. The doctor told him that a positive FISH test without any actual citing of a tumor often means a recurrence will appear. He did havea reappearcne of the low grade tumor on the subsequent cysto. Had a TURB and Mitomycin instilled for the first time. He now reports the FISH and urine cytology show negative. Rosie
Yes, I'm afraid it happens and it's confusing to both doctor and patient. As Rosie said it often precedes a recurrence. But doctors are usually hesitant to aggressively treat someone on just a postive FISH and negative cysto (and cytology). However, you're on maintenance so your treatment is still exuding it's effect and will hopefully prevent that possible recurrence. Good chance.