Newly diagnosed with CC and secondary Liver & Peritoneal mets

Discussion Forum Discussion Forum Introductions Newly diagnosed with CC and secondary Liver & Peritoneal mets

This topic contains 1 reply, has 2 voices, and was last updated by  Julie_ammf 7 months, 3 weeks ago.

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    Hi my name is Jane , I’m 59, an experienced UK NHS nurse of 40 years and I have been diagnosed with secondary Liver mets, diagnosis 26/9/18 , having been well and no signs of illness at all, no weight loss no jaundice etc…
    Started with what I thought was Biliary colic over BH in August, FU bloods threw a curved ball LFTs a bit up and my CA125 (ovarian Marker] was raised, so Pelvic Ultra sound showed some fluid in Peritoneum , but all organs clear, Abdo Ultra showed mass in Liver in Left Lobe.
    At this stage sent to Gynae Oncologist.
    Ct with contrast 5 days later, result Liver a mets and Peritoneal deposits but no sign of primary.
    CT pancreas, Gall Bladder, spleen and all Biliary tracts clear, so a mystery.
    Liver biopsy 1 week ago result now known, Adenocarcinoma of likely Biliary system or Pancreas, with bloods Ca1-99 normal. With still no mass seen.
    A Dr friend said could me a microscopic primary with Macroscopic spread, everyone who’s some across my case said it’s very odd.
    Now MDT this week of Upper GI team and await thoughts…..
    Today 24/10/18 I now know the diagnosis and it’s Cholangiocarcinoma, the infrahepatic duct primary seems to have spread locally and the Liver mass has engulfed it, hence why difficult to see. the Consultant Radiologist and Consultant Histologist came to this decision. I’ve secondary nodules in Peritoneum too.Told you it’s odd… dunno what’s next, seems likely just go in with Chemo…. a Shrink and hold scenario
    Following low Fat diet as any variance causes some sloppy yellow poo, if I don’t eat fat I’m ok.

    This forum is great and it’s interesting to read the success stories
    Thanks for listening

    Jane xx 8)


    • This topic was modified 7 months, 3 weeks ago by  janey164.


    Dear Jane

    Welcome to AMMF’s Discussion Forum and thank you for sharing your experience of cholangiocarcinoma.

    We are glad that you have found our forum a useful tool and please post again if you would like any information or just to share your thoughts.

    We wish you well with your ongoing treatment.

    Kind regards


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