A little unique…

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This topic contains 2 replies, has 3 voices, and was last updated by  KateHill 1 year, 5 months ago.

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  • #13144

    identity
    Participant

    Hi all

    I’m just looking for any advice, thoughts, information, your pennies worth. 

    I had a liver transplant just over a month ago. In a recent follow up clinic I was informed that they since found bile duct cancer in my old liver and that it had already progressed and moved into my lymph nodes. 

    I have yet to have an appointment with oncology and have only half basic information from my liver team. They have told me that it is not curable and the best I can hope for is treatment will slow down it’s progression. There was talk of palliative care and just making me as comfortable as possible. 

    Obviously this has come as a shock to me and my other half. I’ve always known I was a high risk for cancer due to having two chronic diseases, PSC being the one that did my liver in, but it has only acted as a bit of a buffer to the news. 

    I’m really just looking for anyone that may have experienced something similar or could give me some insight in what to expect, how long it may be till I see an oncologist and potentially start treaatment. It’s been two weeks since my liver team informed me. 

    Thanks in advance. 

    #13145

    Julie_ammf
    Moderator

    Dear identity

    Welcome to AMMF’s forum and thank you for sharing your story.

    I am sorry to hear of your recent diagnosis and so quickly after your liver transplant and can understand how shocked you must be.

    Please look at the treatment page on our website https://ammf.org.uk/treatment-options-2/ and also the different specialist centres if you wanted to seek a second opinion https://ammf.org.uk/specialist-treatment-centres/

    I am sure that others on the forum will share their experiences with you and all of us at AMMF send you our very warmest wishes.

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

    Kind regards
    Julie

    #13150

    KateHill
    Participant

    Dear Identity,

    I don’t know if this will help or not but throwing it out there. I am in the U.S- My husband has both PSC and CCA. When we found out we had not heard of either disease so we were in shock and quite frankly in the dark. I did massive internet searches to find places where I could get help and advice from people who support or are going through the same ordeal. I have found two communities to be extremely helpful-this one and one in the US.
    The US url is https://cholangiocarcinoma.org/. You might post there too because your situation is unique and you might get some advice from the community and potentially someone who is in your situation who can provide insight. I wish you all the best and I am very sorry that you have to go through this horrible challenge
    Kind Regards, Kate

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