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This topic contains 3 replies, has 4 voices, and was last updated by  Jodie J 2 months, 3 weeks ago.

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  • #10260

    shiner
    Participant

    Hello
    . My name’s Bill and just yesterday I was diagnosed atypical of having cholangiocarcinoma. I discovered this gem from the text on my discharge letter from the hospital. The Team in the hospital had told me that there was a small mass in the area of the bile duct and that they were awaiting two further blood test result for markers that would indicate. I reckon that between each member of the team, they thought that it had been explained and named to me instead of which it was just a series of broad hints.

    I think that first hints of trouble were in August last year when I went to my GP with a prickly feeling in my abdomen just below the rib cage. No cause was diagnosed. Since then, I have had a series of occasions when the pain in my upper left quadrant accompanied by vomiting has meant 999 calls and being taken in to hospital. These have involved morphine and paracetamol (IV) to get on top of the pain. I’ve been scanned to the Nth degree and as late as January this year was discharged being told that I had no trace of cancer or unusual growths in that area only to be admitted twice this month, once for eight days and this last time for three days where all has apparently been revealed.

    So now my wife and I are in shock at the prospect of me meeting my maker in a year or less.

    #10299

    Julie_ammf
    Moderator

    Dear Bill

    Welcome to our forum and may I say how sorry we are to hear that you have recently been diagnosed with cholangiocarcinoma and that you found out this diagnosis in such a distressing manner. Our thoughts are with you.

    There is a wealth of information on our website which you may find useful, as it is suggested that those with cholangiocarcinoma seek a second opinion from a specialist centre.

    You may find the following links helpful:

    Treatment options http://ammf.org.uk/treatment-options-2/#sthash.HRZd3RFh.dpuf

    Clinical trials http://ammf.org.uk/clinical-trials/#sthash.QMCiQqOr.dpuf

    Referrals and Second Opinion http://ammf.org.uk/referral-information/#sthash.iWc3Hp2K.dpuf

    Although AMMF cannot give specific medical advice or recommendations we do have a wealth of information and experience that we are always willing to share, whenever possible. Please contact us again if we can be of any further help.

    With kindest regards
    Julie

    #11003

    Sandra
    Participant

    Hi Bill I am sorry to hear of your experience as exactly this had happened re my mum being sent home with a diagnosis on the discharge notice before anyone had confirmed cancer. Fortunately I spotted it and demanded a proper consultation . Out of intetest can I ask which hospital this was as I am going to submit a complaint many thanks

    #11182

    Jodie J
    Participant

    Hi Bill,

    I have seen youve not replied but i prey you are ok and are getting the love and support you need at this difficult time.

    Thoughts are with you

    Jodie & Brian xxx

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