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  • Newly Diagnosed, New To The Forum

    What to Do?

    Posted by GG on January 21, 2007 at 10:29 pm

    Start of Discussion
    0 of 0 replies June 2018
    Now

    I posted the topic Surgery 1-24-07 last week.  I got a call from the surgeon at the Cleveland Clinic on Thurs.  He told me the pathology dept. at the CC was not in full agreement with my diagnosis.  (Leiomyosarcoma)  I am supposed to have a cystectomy with Indiana pouch on Wed.  Now his plan (which I agreed to) is to go in and send another specimen to the lab have them take a look at it and then decide what course to take after the pathologists determine what kind of tumor it is.  They are about 98% sure they agree with what the docs here diagnosed, but want to make sure.  I will continue to be under general anesthesia while the deciding is going on.  What should I do?  I told him if they can’t make a 100% diagnosis at that time, we would stay in Cleveland until they are sure, he said he would work me into his surgery schedule ASAP if they couldn’t decide.  How long that could be, I don’t know.  From what I have read, one does not fool around with this tumor.  I have been told by two urolgist when the tumor is gone I will be cancer free.  I’m a wreck! But, I also know this is a very agressive, rare tumor. We’re leaving for Cleveland tomorrow 1-21-07 at noon EST. HELP!

    wendy replied 18 years, 2 months ago 3 Members · 2 Replies
  • 2 Replies
  • wendy's avatar

    wendy

    Member
    January 22, 2007 at 11:14 am

    Dear GG,

    I just want to tell you I know of two women who had leiyomyosarcoma of the bladder, had surgery, no chemo and are fine. You can survive this.

    Nowadays some experts are saying that giving pre-op chemotherapy for rare tumors increases the survival odds. Perhaps that’s what they have in mind with this delay and second look.

    Try not to agonize, let this time fly by quickly, it will be over before you know it and you’ll have a path, treatment plan and look forward to recovery.
    Wendy

  • rosemary's avatar

    rosemary

    Member
    January 22, 2007 at 2:28 am

    Dear GG,

    I think you are doing what you have to do and going to Cleveland tomorrow.  I think you should be very sure before going under anesthesia that you at least know about the 2% holdback.  Is there a 2% chance of sparing the bladder?  I would want to know that before going under anesthesia.  

    Good luck to you tomorrow.  I hope that all goes well with you.  I will be thinking of you.

    Best wishes,
    Rosemary  

    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006

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