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  • Question on percentages.

    Posted by inland1der on November 6, 2011 at 1:44 am

    While waiting for my second opinion appointment this coming Monday, I was looking over the information packet my primary uro gave me, and it says that the general success rate with the BCG therapy is 71%. I would like to ask anyone who has been through this, what “success” means? Cure, total remission, certain amount of years longevity after discovery of disease? It seems like a very vague term to me. I’ve got to believe it’s better than the alternative without treatment. Confused, baffled, scared. Just trying to gather as much honest info that I can. Has anyone “in situ” done anything other than the bcg treatment? Thanks


    I have really gained some insight into this disease and appreciate the support all who who have responded to my queries have given. Thank you
    Rbmc replied 12 years, 7 months ago 6 Members · 10 Replies
  • 10 Replies
  • Rbmc

    Member
    November 29, 2011 at 11:35 pm

    1der….. (ha)
    Just finished my 6 week BCG, so won’t be able to comment on “success” til we go back and look again, which is in Jan.

  • gkline

    Member
    November 7, 2011 at 4:41 pm

    1der……..1der…….. 1der……1duh…….1duh

    I wonder why it doesn’t make any sense to me! :laugh: :laugh:

    And I would like to chime in on Anita’s own user name. I’ll bet she will have a better looking avitar besides.

    George
    :laugh:


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • mmc

    Member
    November 6, 2011 at 10:39 pm

    Yes. Sorry for the crosstalk.

    Before, I was just asking if you go by something other than that username. My username is “mmc” but my name is Mike and everyone knows me as Mike. It’s fine to be inland1der but it just doesn’t roll off the fingers on the keyboard for me. I’ll just call you 1der for short. :)

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • sara.anne

    Member
    November 6, 2011 at 7:27 pm

    Think we had a little cross-conversation going on between Mike and Anita.
    You are, indeed, inland1der!!
    Can get confusing sometimes!!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Inland1der

    Member
    November 6, 2011 at 6:24 pm

    I’m not the brightest candle on the block, but I thought I had my own username, “inland1der” Am I showing up as something different?


    I have really gained some insight into this disease and appreciate the support all who who have responded to my queries have given. Thank you
  • dougg

    Member
    November 6, 2011 at 5:33 pm

    Mike,

    Doug never logs on!…except rarely on Sundays. Just the way it is!

    Anita

    PS Tell Liz Hi for me.


    Anita
    Forum Moderator
    Caregiver
  • sara.anne

    Member
    November 6, 2011 at 5:30 pm

    I will just chime in here with an echo. For CIS, BCG is the treatment of choice. While some people do have severe reactions to it, most of us survived just fine. There is a LOT of information on this web site, and Mike gave you a link for Dr. Lamm’s information, so you will be well-prepared!

    Lots of questions for your second opinion!!!

    Sara Anne


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

    Member
    November 6, 2011 at 1:52 pm

    Anita,

    Since you post about 99.99995% of the posts, I think it may be time to consider actually having your very own username. :) You can even use your own picture.

    Mike (Liz’s husband)
    :D

    Besides, if we have two people sharing one login name, it looks like we have less people than we actually do. We want those stats on the website to accurately reflect the number of users we really have. :)


    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmc

    Member
    November 6, 2011 at 1:49 pm

    Inland1der,

    I had CIS initially and did a few BCG treatments. I had severe reactions and was taken off of it. It is the best thing going for dealing with CIS. Since I had problems, the second best option was mitomycin.

    Mine came back a couple years later and I needed to get my bladder removed but that sounds like a much bigger deal than it actually has been for me.

    Bladder cancer has a very high recurrence rate and the BCG treatment needs follow up courses. It has a very high success rate of keeping the bladder cancer from coming back (as long as one follows the maintenance dose protocol).

    Here is a website link to the site of the leading authority on BCG. http://www.bcgoncology.com/treatment/bcgInst.html. Hunt around at that site for lots of good information from Dr. Lamm.

    Talk to your 2nd opinion bladder cancer specialist about the dose strength. According to Dr. Lamm’s research it seems that a lower dose can reduce the probability of having problems with BCG without losing any efficacy.

    Best of luck in your treatment. Ask anything and everything. Lots of us here have been where you are now.

    BTW: I just celebrated my 3 year cancer free milestone. My first time with bladder cancer was in 2006. This thing is not going to get you!

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • dougg

    Member
    November 6, 2011 at 1:33 am

    Doug has also had Mitomycin-C, which is administered in much the same was as BCG. BCG has a higher success rate.

    Your questions would be very good ones to ask at your second opinion appointment. Please let us know how your doctor responds.

    In the meantime, I did find this on one website…Bacillus Calmette-Guérin (BCG) is the most common intravesical agent used to treat carcinoma in situ (CIS). Approximately 70% of patients have an initial response to BCG vaccine. Rates of tumor progression vary according to the particular study, but more than 75% of patients who initially have a complete response remain disease free for more than 5 years. This is equivalent to 45-50% of those who initially respond. At 10 years, approximately 30% of patients with CIS who are treated with BCG are disease free.

    Best wishes to you! Just to let you know, Doug was first diagnosed in May, 2001 and his has not gone past non-invasive.

    Please join us Sunday night at 8 PM EST on the chat if you have other questions or just want to talk.

    Anita (Doug’s wife)


    Anita
    Forum Moderator
    Caregiver

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