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Starting BCG on 12/20 for CIS Non Invasive

1 year 11 months ago #52466 by Alan
Paul & Sara Anne,

1st, Sara Anne, keep that post as maybe the best summary I have ever seen posted about BCG.

Paul, adding my 2 cents worth of good news is that BCG works on the big majority of us! Also, while the side effects are nor always pleasant, I reminded myself that it is almost a cakewalk compared to chemo. It is very doable! You will come out of this better, stronger and more effective in life!

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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1 year 11 months ago #52464 by sara.anne
Paul, the terms "T1 and T2" refer to the stage of the tumor...that is, how far it has progressed. For BCG, what is most important is the "grade."
http://www.cancer.net/cancer-types/bladder-cancer/stages-and-grades?sectionTitle=Staging
BCG is most effective for HIGH GRADE tumors, that is those that are rapidly dividing. T1 or T2 tumors can be either low grade or high grade. CIS is ALWAYS high grade and requires immediate treatment because high grade tumors have the potential to get out of hand rather quickly. BCG is also effective against high grade "T" tumors, but not so much when they are low grade. Bladder cancer has a nasty little habit of recurring; when low grade bladder cancer comes back over and over, BCG is often tried.

CIS is somewhat like a rash on the surface of the bladder. It is diffuse and, therefore, cannot easily be removed as many of the papillary form of tumors can be. BCG is an attenuated (modified) tuberculosis bacterium that was developed many many years ago as a vaccination for children against TB. It is instilled into the bladder as a wash and its purpose is to stimulate, or activate, the immune system to reject the foreign cancer cells in the bladder lining.

BCG does have some side effects, the most common being fatigue, urinary urgency, and bleeding. These are usually short-lived and show that the immune system is being stimulated. In many cases, such as mine, this keeps the cancer from returning.

The "best practice" protocol for CIS is for an initial 6 week series of BCG installations. Then, a few months later, a "maintenance" regimen is started. The exact timing of this can vary, but mine was to have BCG every three weeks every three months until two years had passed. It has been shown that the maintenance protocol increases the effectiveness of the BCG significantly.

You absolutely want to follow your urologist's recommendations; it does appear that they are "right on" for treatment of CIS. You will also want to keep your appointments for re-checks scrupulously. Like all bladder cancer, CIS can recur...the BCG is meant to help avoid that..but if not treated it can quickly spread.

I hope that I have answered some of your questions, including those you posted below. CIS is not good news (no bladder cancer is) but in most cases it is highly treatable, particularly when diagnosed and treated promptly!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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The following user(s) said Thank You: Alan

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1 year 11 months ago #52462 by Paulsac
Thank you Sara Anne,

I have friends that have had T1 and T2 tumors, and have been successful with BCG. Is Non Invasive CIS a better diagnosis as it pertains to being eradicated with BCG?

Paul

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1 year 11 months ago #52461 by sara.anne
Even though I know you do not want to be here, welcome!

There are lots of us who have been where you are. I was also diagnosed with CIS and after 2 years of BCG (the initial 6 weeks and then the complete maintenance protocol) I am now over 8 years out and no return of the cancer.

You will find LOTS of stories about BCG on this Forum, the good and the bad.
Go to the topic "Non-invasive"
http://bladdercancersupport.org/forum/8-non-invasive-superficial-bladder-cancer-questions-and-comments
and, at the top, you will find several threads that we have highlighted dedicated to BCG. Alternatively, you can use the search function at the top of the Forum.

Since so many of us have had BCG, there are lots of members here to answer your questions as they come up. BCG does have some side effects, no where near what traditional chemotherapy has, and for most of us they are a minor issue.

I am so grateful for BCG....in the case of CIS, in many cases, the only alternative is cystectomy. There are other agents that are sometimes used instead, but they are not nearly as effective.

You will do GREAT

Sara Anne

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

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1 year 11 months ago #52460 by Paulsac
I was diagnosed 2 weeks ago CIS Non Invasive starting BCG on 12/20. I am nervous and I am looking for similar cases.

Paul

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