4 years 2 months ago - 4 years 2 months ago#49777by SmithRBOH
to the earlier post I'm not sure I guess as to a TURB or Scopy but I'm still thinking I had the scope as I was knocked out with general anethesia. I believe in addition to the scope they did a procedure called ureter washings to isolate the cells in each ureter for the FISH test.
At any rate, the biopsies weren't just a couple of days recovery for me. Others mileage may vary.
For the cyst question, my first doctor and the person who viewed my first CT Scan seemed to think that the cyst on my kidney, while large, due to its position it had no immediate concerns and would not contribute to the temporary bleeding I experienced. My first doctor also looked at my prostate during the scope procedure in some capacity and determined that it was slightly enlarged. In his words that is perfectly normal for a man turning 50 but believed that it was the prostate that most likely contributed to the bleeding. That was his opinion before the FISH test results.
The second doctor who I sought for a second opinion looked at the cyst and suggested that the cyst itself , due to inflammation, may be the culprit for not only the bleeding but also the FISH test results.
I have not found any sources online that say that inflammation may contribute to a false positive on the FISH test result but he said that was definitely a possible cause.
At this point I don't have the comfort level I would like in understanding the FISH test - which was my major driver in starting this thread, but I can say that the FISH test results led to much concern, medical cost and physical discomfort that depending on the doctor I chose would have been considered unnecessary.
That said, I have mixed emotions about my primary physician. I am thankful that he chose to go with the "Cadillac" plan of care for me in terms of thoroughly checking everything out, however my results just aren't as definitive as I would like given the depth of testing I have undergone - and from a peace of mind stand point, I can't help but wonder if I'd be better off given my situation had I remained more uninformed on the topic.
Clearly my concern is that I have cancer undetected by the extensive testing and the FISH is a red flag telling them to find it - even though I have 2 professionals telling me that the chances are very very slim that there is anything for me to worry about.
At any rate, I'm at a point where I'll just have to accept that I will be paranoid and ready to jump the gun at the first sign, imagined or otherwise, if anything changes - and I guess when it comes to being a man turning 50 vigilance is better than negligence.
It is great that you are sharing your experiences so that others can share.
I think that you probably had a TURB, not cystoscopy? Cystoscopy
is done in the doc's office...a little camera in the bladder where he looks. A TURB (transurethral resection of the bladder) is done as outpatient surgery under anesthetic and is where the urologist takes samples for biopsy. You wouldn't want biopsy samples taken without anesthsia!!
Anyway, while FISH tests can be useful, they are notorious for being so sensitive that they give a lot of false positive results. This does cause a lot of anxiety. But the second urologist is right...once the results were in your doctor's hands, he had no choice but to pursue it.
So glad that everything worked out for you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
4 years 2 months ago - 4 years 2 months ago#49773by SmithRBOH
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
I assume you are concerned about bladder cancer, correct? And have never been diagnosed with it?
Normally the protocol when there is blood in the urine is to do one or both of the following: CT scan ("urogram") of the lower abdomen; and cystoscopy. I also had blood; no pain; bleeding stopped after a day but I immediately went to see my urologist, who ordered a urogram that discovered my tumor, which was subsequently removed. I also got a second opinion from a different urologist, which I almost always think is a good idea for any malady.
Hope that is helpful; needless to say, good luck to you, hope everything works out well!
T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October
3 months ago I passed blood in my urine for about 18 hours.
I also have a 5(not sure cm or mm, all I know is anything other than 3 is considered large) cyst on my right kidney
I have not passed blood since and if we were to ignore the fish test the doctor would give me a clean bill of health.
My concern is that after another round of expensive scope and examination, if nothing is found , then how can we just dismiss the results of the FISH test? I'm not sure I'll ever get anything definitive from him which is a worrisome position to be in.
So for now I wait for a month for the next round of tests. I'm also seeking a second opinion on the approach just to make sure I have the right level of confidence in my current urologist.