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Advice to newly diagnosed

4 years 1 month ago #49193 by OldEngineer
Alan and Sara Anne - thank you both very very much; and FYI I read your posts here AFTER I separately replied to Lindalou, bad timing on my part or I would have referred her to your excellent answers - sorry about that!

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 #49181 by sara.anne
There are several different protocols for BCG, but the most common is once a week for six weeks, then in three months once a week for three weeks, three months off, again once a week for three weeks until two years have passed. Some uros do only give the initial 6, but research has shown that the maintenance regimen is more effective.

The first couple of doses usually go pretty well....but the more you have the more you body starts screaming bloody murder! This is exactly what you want to happen....the immune system, especially in the bladder, is being stirred up to fight off any foreign (ie cancer) cells.

I was on the full dose for quite a while (don't really remember how long) but by the end of the two years I was down to 1/3 of the initial dose. Smaller doses have been shown to be effective, but I really wanted to get the most out of this.

Dr. Donald Lamm is one of the pioneers in BCG therapy. His protocol is a bit different, but you might find this interesting:
http://www.bcgoncology.com/treatment/bcg.html

Sara Anne

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

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4 years 1 month ago - 4 years 1 month ago #49179 by Alan
My BCG was at full dose-whatever that means. There are many protocols with after 6 weekly installations then 3 weekly every 3 months for a year then 3 weekly for 6 months among others until a few s more years have elapsed (Sara Anne is more up on that one). A few docs say just do 6 and that is it. I have read in Europe once a month for a year. My URO does 6 on, 6 off, 6 more and that is it. The important thing is to at least try to 6 done. Rarely the side effects preclude the 6. Smaller concentrations have also been proven to be good. Simply put, you are revving up your immune system.

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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4 years 1 month ago #49178 by OldEngineer
Sara Anne and Alan - thank you both very much. From your experience, is the BCG treatment once/week for six weeks initially - and then, at what frequency after that initial "dose?" From what I have read, apparently the concentration of the mixture they instill can vary and the data seem to say that lower concentrations work just as well as higher ones and have fewer side effects (although there may be significantly different effects batch to batch). May I ask what your concentrations were (if you happen to know)?

I know that I am lucky this was found before it metastasized, and also lucky that the medical care here in the US is superb, so I don't mean to sound morose. Just another one of life's challenges which require action to surmount.

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 - 4 years 1 month ago #49177 by Alan
Engineer(I can't call you Old). My URO said he had to do a second TURB and I was confused on why but, I learned it is very normal and very protocolish (new word developed!)

We are all individuals. 34% or thereabouts is a stat that is close to others I have read. Stats? I consider almost worthless as everyone's cases are different. Conversely, that would also mean 66% will not have a reoccurrence.

You will get this behind you!

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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4 years 1 month ago #49176 by sara.anne
Well, probably not exactly what you wanted to hear, but workable.

You have a good urologist; studies have shown that even in the best of practices a second TURB will find things that were missed the first time. The second time the urologist has a better idea of exactly where the problem areas that are uncertain are located and can give them special attention.

Good Luck!!

Sara Anne

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