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On The Brink

4 years 1 month ago #49506 by salmon
Thanks for the encouragement!

It is quite true - worrying before the facts are in is not productive. Having had numerous MRIs and CT scans in my life I was truly surprised when this CT came back with such uncertainty. It was a brand new machine too! My totally wild guess is that it has something to do with the protocol they use to administer the contrast which is different from what other imaging centers use.

I'll post back an update. Hopefully it will be good news.

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4 years 1 month ago #49502 by OldEngineer
I absolutely second Johns Hopkins in Baltimore. They are world class. If you want to come all the way to NY City, then Memorial Sloan Kettering. Needless to say - I wish you very well, the key is to ensure they catch it at the earliest stage. And once the urologist gets the specimens for pathology review, you should consider getting a second opinion from another pathologist in reading the slides; I did that and the results differed, in a good way. We will all be praying for you that it is benign!

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

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4 years 1 month ago #49498 by Cynthia
First take a big breath. Until you know what you are dealing with you are as my husbands grandmother would have said "buying trouble and paying interest on it". But if you do need treatment you are within easy distance of one of the best places in the world for bladder cancer John Hopkins.

Good luck and keep us updated we will cross our fingers that you tell us it was a false alarm if not we are here.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 years 1 month ago #49496 by salmon
I'm not quite ready for the induction ceremony yet but I'm on the brink.

CT Urogram identified a 1cm in largest dimension questionable soft tissue mass at right base of bladder. Radiologist recommended cystoscope to evaluate. Says it could be pollipoid mass but must confirm clinically

Sonogram a few days prior to the CT was negative.
MRI 15 months ago also negative.
They have been monitoring my kidney cysts which are simple cysts so that's why all the imaging.

Microscopic blood in urine sample triggered the CT Urogram w/wo contrast.

Cystoscopy is scheduled in a couple of days.

Needless to say this is pretty unnerving. The uro says it could be a "fold" or it could be "legit". We won't know until they look.

In the meantime I've been reading and reading and landed here...

One thing I know for sure is that if it is something then I want to find the best specialist available. I am around the Wash DC area but didn't see much on this site for recommendations. So, help here would be graciously accepted.

I'm trying to stay calm and hoping for the best. However, this is really unnerving.

Another question I do have is if it turns out to be a polyp or something how fast do they want to perform the TURB ? Will I have some time to change my uro if I do find one that concentrates on BC ?

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