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What does this all mean?

12 years 7 months ago #4057 by timb
Ron
I'd be asking for grade, stage, type, expected treatment regimen; that kind of thing (in plain English preferably and ask if you don't understand!). write a list before you talk to him as you may forget it all once the conversation starts. If it's a face-to-face, take someone with you with a notepad. And try not to worry too much. It could easily just be a flat tumour and not the CIS. And if it is the CIS, plenty of people have been treated successfully with bladder-sparing therapies for years. Let us know when you know something.

All the best and good luck; I know how nerve-wracking this all is

Tim

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12 years 7 months ago #4056 by Patricia
Vanceman....i had CIS and it was 3 years of blood in the urine before i was diagnosed...so its a nasty little guy...but i tend to think it doesn't move too fast....tho mine had invaded the muscle my surgeon at Mem Sloan was able to get it all out including the margins...but reoccurance is great with CIS so out came my bladder...but i had plenty of time to pick the right surgeon and procedure. Pat

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12 years 7 months ago #4054 by vanceman
More Clearification....

I called the Doc today and did find out that the removed Tumor was sent out for Biopsy. They do not have the results yet---and as Tim described, I hope it is not the CIS grade. Based on some of what I have read, this can be very unpredictable and possiby aggressive?

Is there any other questions I should ask about the results of the test when I call back?

Thanks again for your help!

Ron

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12 years 7 months ago #3987 by timb
Ron
A biopsy should have been done. sometimes this is not possible if the tumour is really small but doesn't sound like the case for you. BCG is basically strain of TB thats introduced (in a suspension) into the bladder via a catheter. you hold it there for 2 hours or so (this can be done at home; not the first bit but the holding!) and then pee it out. It's function is, put simply, to stimulate an immune reaction in the bladder lining and thus attack tumour cells with your body's own defence. It can be uncomfortable for 24 hours and gives you urinary frequency and a bit of bleeding (on the can a lot) and there is a list of more severe potential side effects but for many people this is all that happens. It's usually done as a 6 week "induction" followed by quarterly maintenance doses of 3 weeks. This protocol can vary a lot depending on your disease and the docs preferences...there's a lot of contradictory stuff about BCG and it's not fully understood how it works.

I've had many bedside post op conversations with my doc and I remember very few of them! You're groggy from the drugs they give you and pretty disorientated. Not the best situation! It's still good to have but no substitute for a proper chat some weeks after. I also found it useful to have someone else along, preferably with a notepad as your mind will be going in different directions and you won't remember everything. Plan your questions carefully before hand so you know exactly what you are going to ask before you go in. Many more will come up after the meeting so don't be afraid to ask for clarification as much as you need it. At the very least you want the stage, grade, type and number of tumours. Position can be useful too. Then I'd want to know what would be the expected treatment regimen. It's funny, some people just don't want to know anything at all and others want EVERYTHING!

I think the oncologist is a very good idea personally.

Glad we could help Ron

All the best

Tim

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12 years 7 months ago #3981 by vanceman
Excellent information...

That is why I came around! As you indicated, my information is vague, and the information that I did include is right from the pathologist report.

Clarification--- The tumor was removed and cauterized. I have no idea if a biopsy was done.

Looking back on the "lack" of information that I have, it is in part due to the timing of his conversation with me about the results---and that is immediately following the procedure when Im barely awake.

Maybe this is a convincing reason to get my unanswered questions answered by an oncologist??

I also remember him saying something about BCG--- How is this procedure performed?

Thanks again for your help!

vanceman

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12 years 7 months ago #3959 by Mike
Vanceman I think you will find some useful info here not that our link does not have a whole lot of info. But this shows not A1 as you refer but 1A etc. Take a peek I found some very interesting things there. Best Wishes, Joe

http://www.healthsystem.virginia.edu/uvahealth/adult_gyneonc/diagnosi.cfm

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