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BCG?

11 years 4 months ago #24808 by britt
Mike, I might have jumped the track. I think the term CIS came from you. From the pictures that I saw, tho it does match the description of the lesion. There was a tumor but most of the work he did was on the bladder wall. Again I remember him saying that it was a non=invasive surface cancer. He told me while I was in recovery that if one could "pick" the cancer to have, that would be the one as its one of the less destructive of its kind. It was reading this that caught me short.
CIS of the urinary bladder is defined as a noninvasive, flat, and high-grade cancerous lesion confined to the superficial lining of the bladder. Unlike most malignant tumors, carcinoma in situ (CIS) of the urinary bladder is a highly malignant and aggressive cancerous lesion.
Somehow that makes it sound worse than the invasive typt.
I will get a 2nd opinion! What would be best, oncology or urology?
I will know something by tomorrow!

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11 years 4 months ago #24806 by mmc
If you were diagnosed with CIS, the BCG is the recommended approach IF it doesn't interfere with all of the other things you are on. Another possibility is mitomycin, but again, that is IF it doesn't have any sort of interaction issue.

Research what the top cancer center recommendations are for treatment for CIS if that was the diagnosis. I forgot if you had said that was the original diagnosis. If not, this is not one of those things you can diagnose yourself based on reading.

Like Pat said, pay the $25 and get your records, including the Dr. Notes and PA notes from your visits.

Different treatment options are warranted for different diagnoses. If you think the VA is deviating from the standard treatment for your diagnosis, then bring in the documentation from your research and bring it with you for your next appointment.

I strongly recommend getting a 2nd opinion once you have your records. Go to a cancer center for the 2nd opinion. Then bring the opinion back to the VA and ask them to explain the deviation in treatment plans (if there is one). You may to follow up with the patient advocate again armed with that 2nd opinion also if you feel it is warranted. Even if insurance won't pay for a 2nd opinion it is REALLY important so you have to weigh the risk versus cost and decide what you want to do.

Hope this all works out. Sorry to hear that you have to go through so much consternation trying to figure out the best plan of action.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 4 months ago #24805 by britt
BTW. I followed up on the link about CIS. From the description it sounds right on the money! I could see where the entire wall of the baldder is discollered before the TURB. After it was a baby pink.
I know Ive been told to take a step back and not to obscess over this. If what I read is true than Im confused. The article I read stated that the noninvasive surface cancer is one of the most aggressive forms. When I came to in recovery the Dr said I was lucky that it was the mildest form of cancer there is.
Is that only because if treated properly it wont leave the confines of my bladder.

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11 years 4 months ago #24804 by britt
Pat, all the meds will be in my file. I get them thru the VA and the VA does the RX on all but my pain meds.. Ive already found out that some of my combos are a no-no.
Taking a puff of albuterol along with the correg can cause extrmeme respiratory failure There are a number of others but none as severe as that could be. Ive had to just up and drop several meds due to side effects. Synthroid and digitalis both caused major angina attacks.
With all thats going on its reaaly irksome to me how the PA just brushes my diagnosis off. According to him, it isnt real until it cpmes back

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11 years 4 months ago #24792 by Patricia
Pay the $25 dollars and get the pathology report so you know what you're up against......then let us know.
You need a head coach. Take your list of drugs into your next visit tho i wouldn't guarantee that the docs will know what half of them are for or what interacts with what.
Pat

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11 years 4 months ago #24791 by mmc
No idea what to say dude...
Your list of issues and prescriptions is so far beyond my comprehension there's nothing I can really say.

Best of luck!

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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