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Followup Cystoscopy

3 years 8 months ago #48535 by sara.anne
JMARK, I hope you do not mind if I ask you a few questions....It appears that you had a bad experience with either cystoscopy or a TURB? Perhaps if you could tell us a little about this we might have some better suggestions for you. There are so many of us here on the Forum that I am sure that there will be those who have had similar experiences.

Bladder cancer can be an insidious disease and it is not something that you want to fool around with!! BUT with careful monitoring we can defeat it...and we want to help you do this also!

Seven years after my diagnosis (first with papillary low grade and then, after a second TURB a few weeks later with CIS) two years of BCG and cystoscopy every three months for two years, every six months for three more, I am now on once a year with no recurrences. My annual cystoscopy is coming up soon, so I am as ususal a bit nervous.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 8 months ago #48534 by Alan
My URO wouldn't even do the NMP22 do to many false positives and false negatives. On top of that the cost he said is simply not worth the trouble considering the above. Cytology has the same issues (he said it is more reliable) but, usually being done with a scope taken together it is a useful test. I am on yearly checks with scope and cytology and in between (6 months) with my yearly physical we do a cytology being a non invasive test.

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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3 years 8 months ago #48533 by sara.anne
NMP22 and other urine cytology tests are a valuable addition to cystoscopy, but cannot substitute for it. They tend to occasionally show both false positives and false negatives. If a urine cytology test comes back positive, the urologist will do a lot of additional testing to validate this, and it can indicate the presence of cancer before it is found visually by cystoscopy. When cancer is found early that is a very good thing. When the test is in error, it can cause a lot of worry. But, since it is useful in addition to cystoscopy, most of our urologists do these tests routinely.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 8 months ago #48532 by jmark
Would anyone have any input on the reliability of the NMP22 lab test and/or imaging as opposed to the reliability of a yearly cystoscopy as a tool for the identification of bladder cancer in intermediate risk patients?

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3 years 8 months ago - 3 years 8 months ago #48529 by Alan
Since my DX 7 years ago, I would estimate I have had 14-16 of these lovely exams. Now, it is a yearly exam. Is it fun? No. Painful, not really! More like uncomfortable for 30 seconds with some discomfort for a few voids after. If this is the worst I have to endure to insure there are no more re-occurences the rest of my life, so be it. Peace of mind and an early attack mode should it come back. A no brainer. So many people have it a LOT worse!

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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3 years 8 months ago #48526 by sara.anne
I assume that you will be going in for cystoscopic exam, not another biopsy procedure. Personally, I would MUCH rather have cystoscopy than go to the dentist. It is nothing compared to losing your bladder,or your life, to bladder cancer.

Since there were abnormalities present in your biopsy last year, it is a no-brainer to get an exam this year to be sure that nothing has progressed.
Please do it!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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