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POS FISH, NEG CYTOLOGY, NEG CYSTO (TCC Kidney?)

2 years 4 months ago #51615 by Alan
I am perplexed also! I'd keep the final appointment but, I have learned at some point in time I have to trust someone at some point. Grasping at straws, is it possible your current medication cause any of your symptoms?

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 4 months ago #51614 by pplexed
Thoughts on follow-up. I recently had a retrograde bilateral pyelogram and cystoscope with bilateral cytology. Both kidneys per my urologist were fine, and did not display any filling defect. Cytology was negative on my left kidney, and atypical on my hypoplastic right. My urologist has indicated that he does not see any evidence of cancer, and I do not have anything to be concerned about. He has also stated that the FISH test has a two percent rate of diagnosing cancer, and that the atypical cytology is normal per my hypoplastic right kidney. I am still having pain in my urethra, and clumpy ejaculate discharge. In addition my prostate upon ultrasound measures 31cm. I am scheduled to meet with an oncologist at RCPI in Buffalo, however this appointment was made before the test, and cytology. What are the forums thoughts?

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2 years 5 months ago #51459 by LillianG
Jay, so sorry you are going through all of this. I agree with Alan - you need a second opinion for your peace of mind and also to be sure that nothing was missed. If I were you, I'd seek a second opinion at an NCI hospital that specializes in bladder and urinary tract issues.

You can use the Treatment Center Finder located beneath the Help link at the top of this page to locate an NCI facility near you - or let us know where you are located, and someone on this site might have a suggestion of a great place or doctor in your area.

I hope all goes well for you,

LillianG

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
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2 years 5 months ago - 2 years 5 months ago #51456 by Alan
Jay,

Welcome and glad you found us but, we are sorry you have a reason to be here. None of us are doctors however for my money I'd get a second opinion if possible just to get a set of fresh eyes and for peace of mind. Also, I never had an MRI but a CT Scan with contrast dye. My tumor was so small that the radiologist missed it saying "no tumors visible in the urinary tract". My ever diligent URO personally read the report and saw a small shadow (it was papillary vs CIS which is flat and normally only found via cystoscope).

On cytology and FISH. The FISH is notorious for false positives and cytology from what I understand is best reading high grade tumors meaning neither is a perfect diagnostic test. With one functioning kidney the second opinion is where I'd start.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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2 years 5 months ago - 2 years 5 months ago #51454 by pplexed
I am confused and scared, as I feel that I have been blown of by several doctors for the past seven months. I have a solitary left kidney; my right kidney has congenital atrophy. In early December of 2015 I was switched to Hydrochlorothiazide, from Lisinopril as my wife was attempting to become pregnant. Unfortunately, in mid January I noticed a severe pain my left kidney, the pain was on and off, until late March where it now persists on a constant basis. I have had two ultrasounds which show mild pelvictatis (hydronephrosis), and two compliment MRI's that do not show any abnormality. I recently had a FISH test on 6/28/16, which came back positive as 4/25 cells showed polysomy for chromosomes 3, 7, 17, and 9 (and was indicative of bladder cancer). However, concurrent urine cytology was negative, along with a bladder cystoscope. I am only 38 years old, I do not present with hematuria, nor do I smoke. Due to my biology background, I think I have TCC of the kidney, or renal pelvis due to the hydro, positive fish, and seven months of pain. At this point both urologists are telling me that I am crazy, and that there is no way I could have cancer at 38, and that it is something else. My current symptoms are constant kidney pain in my back, and abdomen, in addition to a constant burning feeling in my urethra. What are the forums thoughts? Should a CT with contrast be ordered, I feel that I may have an aggressive form of cancer, and with only one kidney my prognosis is bleak (remove the kidney, and go on dialysis).

Sincerely,

Jay

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