Hello everyone, it was so important to me to find a forum like this when I had questions and I wanted to follow up on what I've gone thru
So I just heard back from my doctors office a month after my second cystoscopy (forgive my spelling).
After 2 positive FISH tests my doctor felt another (my second) cystoscopy was necessary where they also isolated the Uretal tubes. Ultimately he took 5 biopsies and had FISH tests performed from each uretal tube. In addition I also had another CT Scan with context and I'm relieved to say that the fish tests, the biopsies and the CT scan all came back with nothing.
However living with the threat of this over the summer and well into the fall, I have great empathy for anyone going thru this. I was scared, I was a mental wreck unable to focus on anything - and my family life and work suffered because of it. Perhaps the worst part is from all this is I will never be back like I was before this mentally - I'm always going to be waiting for cancer to strike me. I feel for anyone who is going thru this and I pray that medical advances and competent medical staff minimize your struggle.
If you do get biopsies done in your bladder, drink lots of liquids, stay off aspirin and don't do any serious physical labor for awhile. 3 weeks after the biopsy, I lifted my dog off the floor and put him into the bed with me. Immediately after that I felt (imagined or otherwise)a slight burning sensation and sure enough - I was back to passing blood, but it only lasted a few hours.
What I really wanted to relay here is my experiences with the FISH test I had a 5/100 and a 7/100 which are considered positive but just over the line. I pressed my doc what numbers he has seen and he has said its not uncommon for them to be in the teens. If my first test had come back a 4/100 as opposed to 5, I wouldn't have heard a peep from my doctor for a follow up FISH test and the second round of testing. Now don't get me wrong - I'm glad my doctor was cautious and I'm glad that it appears I do not have cancer, but after the second cystoscopy, I passed blood for 3 weeks, including blood clots that were often larger than a quarter with every urination for at least 3 days, which blocked my uretha at one point and I was close to needing a catheter. Even now I have flank pain throughout the day.
Again, I know there are many people on here that would trade places with me in a second and I'm not trying to say I am facing the challenges they are. I just want to share my experience for people who are unfortunately just starting this process.
I'm not still not certain I am negative on the FISH test, however they can't find anything in the bladder and the ureter tubes had no anomalies - so if I am to assume my doctor is correct in saying I do not have bladder cancer then I had 2 false positives in this FISH test that put me in a mental state where I thought I was going to need anti-depressants just to get anything done.
I got a second opinion from a doctor in a different urology group and he told me that he wouldn't have given me the FISH test at all based on the results of my scopy and cytology, but he did say that once the FISH tests came back positive, as my doctor he would have been compelled to do follow up testing.
I'm not posting this for anyone who has a positive on the FISH test and is looking for false hope - but I did want to share my story - and if anything changes, I will come back to this thread and follow up on it again.
I'll probably wait 6 months and get another FISH test. I'll dread doing it in the fear it too will come back positive and I start this over again but I can't let this hang out there in a grey area ignoring it.
I wish good health on everyone reading this and I hope it helps someone in the future