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Lost in Philadelphia

3 years 9 months ago #48449 by sara.anne
Just one more bit of advice....while it is important to take care of such issues relatively quickly, you do have time to think things over before you make a decision. Even a month delay will not make a big difference in a condition that has probably been in the making for years.

When you have all the facts, and if you decide to seek a second opinion and you get the results of that discussion, then you will be much better equipped to make some decisions.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 9 months ago - 3 years 9 months ago #48447 by joemazz
Thank You for the response. I guess I am just worried I will need to make some quixk decissions once the Cystoscopy is completed and although I trust the urologist will want a 2nd opinion. Even then I can only offer the 2nd person the original doctors findings. Guess this is all guess work till after the Fish results and cystoscopy are completed. All I am sure of iss traces of blood and 1st urine sent out were abnormal.

This is great to have this, again thank you it feels good to know there are kind people willing to share and guide others

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3 years 9 months ago #48444 by sara.anne
Wow...you are dealing with some issues. Will try to clarify what I can...

First, FISH tests are very useful, but they can show a lot of false positives...meaning that sometimes they indicate cancer when there is none. That is why they are not relied upon solely as a diagnosis, but biopsies are also necessary.

You say that you are scheduled for cystoscopy in a hospital? This test, where the urologist uses a small camera to look at the inside of the bladder, is usually done as an outpatient in the office. However, if you do have a complicated situation it may be done in the hospital. If it appears that cancer might me present, the urologist will schedule a TURB (transurethral resection of the bladder) to obtain samples to send to a pathologist for analysis. The TURB is done in a hospital under general anesthesia and you usually go home the same day. Only after the pathology report comes back ...and it can take a week or so...will a diagnosis of cancer or no cancer be made,

Since your situation is complicated by other issues, you might want to consider having an exam and second opinion at a center that specializes in bladder cancer. There are two located in Philadelphia....Fox Chase and U. Penn. Also, Johns Hopkins in Baltimore is one of the best and is not that far away, nor is Memorial Sloan Kettering in NYC. On the other hand, Cancer Centers of America is a for-profit chain that is not known for specialty treatment in the bladder cancer area.

Wishing you lots of good luck

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 9 months ago #48442 by joemazz
Hi
I had a 24 hour urine test that showed traces of blood. I have a 8mm kidney stone and the urologist thought it may have grown or shifted. He ordered a CT w/o contrast. I also have a hydro seal of R testicle and cyst in the hydrocele. This has been since 1980 and I am 65 years old. It is watched yearly. In late January a urine test was ordered and sent away for screening. It came back with abnormal cells. Now the urologist says there were traces again in the urine at his office so did a FISH test and wants to schedule a cystoscopy at the hospital in 3 weeks. I know he feels the FISH will be abnormal. I had a cystoscopy done a year ago and was told it was normal with no signs of cancer? The urologist is fairly well known in Philadelphia and has a large following. He has a good rating on US News and WebMD, 5 out of 5 stars????
I have a Cancer treatment center and Fox Chase Cancer Research Center in my area. I am so lost on what to do. Wait for then FISH test to return and get the Cystoscopy then see what I am looking at before any decisions on who to use? Any thoughts would be so appreciated. I am pretty much alone here so not a lot to bounce ideas off of.

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