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    cysto last week not so good

    Posted by cancersucksbigtime on November 5, 2015 at 8:43 pm

    Start of Discussion
    0 of 0 replies June 2018
    Now

    I think I told you all that my doctor couldn’t do the last cysto because I had a UTI. Well, he did it last week (Oct.28), found “something” which turned out to be another cancer.

    This is the third recurrence I’ve had since August of 2012. I’ll be having another TURB next Thursday, Nov. 12, and since I had a high grade kidney cancer in 2012, I also have to have a CT with contrast of chest, abdomen and pelvis next Monday. Needless to say, my husband and I are not very happy.

    I’ve had 6 mitomycin treatments and, so far, 15 BCG’s. This is pretty upsetting, and I’m feeling sad and fearful. Any words of wisdom would be greatly appreciated.

    Thanks you all,
    Mary

    Rockyiss replied 9 years, 5 months ago 3 Members · 5 Replies
  • 5 Replies
  • rockyiss's avatar

    rockyiss

    Member
    November 7, 2015 at 2:17 am

    Hi Mary , If you can go to New York that’s where Dr. Schoenberg is, formerly of John Hopkins . He is one of the best out there you can look him up, he is all about bladder cancer. Good luck on your turb I know the stress all this can cause and how hard it is to think good thoughts but you have come thru a lot and you will make it through this too. Rocky

  • cancersucksbigtime's avatar

    cancersucksbigtime

    Member
    November 6, 2015 at 10:11 pm

    thanks Sara Anne.
    After this TURB, I will discuss a second opinion with my esteemed urologist!
    He is my go-to guy.
    Mary

  • sara.anne's avatar

    sara.anne

    Member
    November 5, 2015 at 11:22 pm

    Fox Chase is an NCI designated Cancer Center, but its primary expertise does not appear to be in bladder cancer. It wouid probably be an “OK” choice. BUT if you can travel a bit, two of the very best in the nation are just a couple of hours away….Memorial Sloan Kettering in NYC and Johns Hopkins in Baltimore.

    Sara Anne

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

    cancersucksbigtime

    Member
    November 5, 2015 at 9:53 pm

    Hi Sara Anne,

    I live just outside of Philadelphia. I do have a contact at Fox Chase Cancer Center. They are all about cancer, and I think after next week’s turb, I will contact them about my situation.
    Thank you for your input.
    Mary

  • sara.anne's avatar

    sara.anne

    Member
    November 5, 2015 at 9:00 pm

    So sorry to hear your news, Mary. I don’t remember where you are being treated (and am having eye troubles which is limiting my ‘puter time). BUT if you have three recurrences in such a short time, it would seem imperative that you get a second opinion from a MAJOR center that treats lots of bladder cancer. It is obvious that the treatment with BCG is NOT working. This is not something that you want to fool around with.

    If you let us know where you are located, someone may have suggestions as to where you might be seen. Or, on our Home page, there is a Treatment Center Finder
    http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder
    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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