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Maintenance BCG
Have my first maintenance BCG tomorrow. Finished the first primary series in June. Cysto in July looked good. So I have (almost) forgotten about the whole deal until now. The horrible feelings are all back again. Just a reminder of what lurks. My uro told me that just because I “sailed through” the first series doesn’t mean that I will this time. Did he HAVE to tell me that?
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator31 Replies-
I figured she would take after you! A cutie! Hey, ya’ll this site has helped me immensely in my fight against cancer! Stats are just that and almost meaningless as every person is diffrent with so many variables. We fight on.
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.
I read the stats and then try to ignore them. When I read research I generally go the the discussion section at the end and hope it explains the results in terms I understand. You are right it is hard to sort out how reputable the person doing the research is let alone if the research design really gets at what they need.
Example unrelated to Bladder Cancer. I just read a study today does alcohol help nursing mothers produce more milk as folk wisdom says. The study used wine in orange juice and said it produced the opposite effect. Most of the fold wisdom says drink a glass of beer. So would beer have a different effect. We don’t know as they used wine. They could have used beer and non alcoholic beer to check for difference but didn’t.
Julie
Volunteer Coordinator
ABLSCAlan…the beautiful ballerina is Sophie my 1yr old granddaughter..but she definately takes after me!!!:silly:
I definately read too much…i really don’t know where stats come from…bad doctors, good doctors, international, whatever…….I wish i could zero in to each of the top everything and top everyone and just get their stats…all i can read is stats from someone compiling from who knows where…..Heck i just found out i’m in a 28% to make it 5 yrs……..i really hate stats!….Don’t pay any attention to me!!
Pat
I think the debate is about maintenance BCG not the initial BCG. Some will do the whole protocol with BCG for several years. Others will do an initial series and no maintenance. What we do know is that CIS has a high recurrence rate even with maintenance BCG. These days I think it goes into hiding but never really goes away. Julie
Volunteer Coordinator
ABLSC
Rosemary wrote:
From what I understand ,D., it isn’t a controversy about BCG, per se,
but it seems to be more of a debate between Doctors about the advisability of delayed cystectomy because of trying a BCG protocol.My Top Doc at UNC Hospital seemed happy for me to be able to go forward with BCG.
Maybe you can ask your Doc what he means about “controversy” and then come back and report to us.
Rosemary
I see. Yes, I’m definitely going to discuss the matter with my uro, and I’ll let y’all know what he says.
Don
From what I understand ,D., it isn’t a controversy about BCG, per se,
but it seems to be more of a debate between Doctors about the advisability of delayed cystectomy because of trying a BCG protocol.My Top Doc at UNC Hospital seemed happy for me to be able to go forward with BCG.
Maybe you can ask your Doc what he means about “controversy” and then come back and report to us.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Rosemary wrote:
I personally didn’t think that I was reading something into this when he puts it this way…
“BCG may not be a panacea for stage T1 disease in the long term”
…and then goes further to say…
“Progression at sanctuary sites, ultimate recurrence and progression with time”
Yikes!!
I do think that this statement from Dr. Herr is proof that there is some controversy between the opinions of top bladder cancer specialists.
Ro
So, it sounds as though my uro has some basis for his assertion that there is some controversy regarding the efficacy of maintenance BCG. Or am I reading too much into this discussion?
Don
“Ultimate recurrence”could mean that you will die of cancer at an advanced age. Other than the fear of death which is a human trait, the present inability of doctors to “predict” the progression of BC is a fear that is not irrational. We fear the worst.
I personally didn’t think that I was reading something into this when he puts it this way…
“BCG may not be a panacea for stage T1 disease in the long term”
…and then goes further to say…
“Progression at sanctuary sites, ultimate recurrence and progression with time”
Yikes!!
I do think that this statement from Dr. Herr is proof that there is some controversy between the opinions of top bladder cancer specialists.
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Good point. Gotta ask after seeing the wonderrful ballerina so many times? Daughter/grandaughter/or at a younger age?
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.I think the key words are rapid recurrence and depth of penetration which as we all have seen is often understaged…….Don’t read into it what isn’t there.
For some strange reason we’ll all chop off a breast, take out a kidney or whatever.. but we hang onto our bladder like its made of gold. Hey…so did i…I was the biggest chicken of all time:S
Pat
I tried to read a lot of abstracts that were free from ASCO and Journal Of Urology. After BCG, from what I read there is a fairly good statistical # of no more recurrences. I am sure there were a lot of variables. Type of tumor, grade, size & things we can quantify. It is something we have to live with and be prepared to take other steps if need be.
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.
Good point, Rosemary – Mentally I am almost at that point. All the ups and downs over the past two years really wears me out! Also, I was told BCG works well on CIS. I hope that is true. I have asked numerous times if BCG just buys time and have been told, by more than one Uro that they have had great success.
I guess the next question should be – “good success buying time or good success stopping the cancer” :)
Bless the ones that have been at this much longer than me and still have such a positive outlook!
Good luck to all!Nix
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Well this is scary.
Is Dr. Herr telling us that there are no successes with BCG treatment for T1 disease? Is he saying “Go ahead and avoid the ultimate heartache and have the surgery.”
This idea seems to oppose the research.
Am I interpreting this correctly??
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Having had Dr. Herr as my surgeon i can tell you he probably sees more blc than anyone and he’s very no nonsense. His reasoning is along the lines of
“BCG may not be a panacea for stage T1 disease in the long term, particularly in the setting of rapid recurrence, more extensive penetration and/or carcinoma in situ. Progression at sanctuary sites, ultimate recurrence and progression with time, and issues affecting quality of life (bladder contraction from repeated resections and intravesical BCG) may affect the advisability of avoiding cystectomy. Despite the admonition that a patient’s own bladder is better than a reconstructed one, the potential for cure and the qualifications of a reasonably well functioning orthotopic bladder may be preferable to many individuals who otherwise might die of unpredictably progressive disease.”
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