Newly diagnosed

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  • #15171

    Hettie
    Participant

    hello

    Gosh how to start?
    <p style=”text-align: left;”>I’ve read quite a lot but am still pretty confused. My father was diagnosed (not officially confirmed as no biopsy) with cholangiacarcinoma in October. This was following some erratic liver scores through his GP. He had no symptoms apart from a little tired and achy legs. We have been told by his consultant that he is 99% certain he has this cancer. However, it does not appear to have spread to anywhere else. He has lost (shriveled up) about 40% of liver on the left but the right side of his liver appears to  grown to compensate. The cancer is in the bile duct on the right side however it is now encroaching on the other duct. Dad has had a follow up scan 2 weeks ago and results are in a week . I assume to see if it’s grown. We have not so far had any info on treatment or on what next steps should be. Should he have a biopsy? Does he need to in order to access treatment? Can the bile ducts be taken out? Lots of questions, but what I would be keen to know is how we move forward and what questions should we be asking the consultant next week. My Dad is 80 in very good health otherwise, very fit and strong. More like a 65 yr old. Any help would be hugely appreciated.</p>

    #15172

    Michaela
    Moderator

    Dear Hettie,

    Thank you for posting to AMMF’s discussion forum, although we are all sorry to learn that your Father has been diagnosed with cholangiocarcinoma.

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    Unless already under the care of a specialist experienced with cholangiocarcinoma, we do suggest that patients who have received a diagnosis of cholangiocarcinoma (bile duct cancer), should ask to be referred for a second opinion with a named consultant of their choice, either to ensure their diagnosis is correct and/or for reassurance that the treatments recommended are the best options for them.

    Details on how to go about this can be found on AMMF’s website: https://ammf.org.uk/referral-information/

    And information on specialist centres in the UK can be found here: https://ammf.org.uk/specialist-treatment-centres/

    Regarding the various questions you have about your father’s treatment– There is more information on AMMF’s website regarding treatment options in the UK https://ammf.org.uk/treatment-options-2/ , including biopsies and surgery.

    I hope some of this is helpful for you, and that others will come in and share their experiences with you. And please post again if there’s anything else you think we can help with, and to let us know how your father is getting  on.

    With kindest regards

    Michaela

     

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

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