Enlarged liver and cysts?

Posted , 5 users are following.

had to have a ct scan done for weight loss as i keep loosing weight and got results today and was told i have a enlarged liver and cysts. I am really worried about this? anyone help me out, i dont drink 

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7 Replies

  • Posted

    Hi Dawn, did they provide next steps? Try and stay positive. I'm wishing you the best. 

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  • Posted

    The same  thing happened to me last year, and further tests showed I have a rare genetic disease called Caroli's disease. Nothing to do with drinking. You will definitely need more tests and will need to see a liver specialisy

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  • Posted

    drs calling me Monday, not sure what happens next, im scared it is cancer or something that will kill me
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    • Posted

      Dawn, can you tell me why you think it might be cancer? Do you have yellowing of the eyes or skin, or itchy skin? Over the last year I have met many people with liver disease and for none of them has it been terminal. One of the most helpful organisations in the early days when I was first told I had an enlarged liver and cysts was British Liver Trust. When I first had the CT result I was given three possible diagnoses - liver cancer, intrahepatic cysts, and Carolis disease, and it was not until I had a specialist endoscopy called ERCP a month later that it was confirmed as Caroli's disease but I was told all three are operable. Intrahepatic cysts and Caroli's disease are not terminal.  Liver cancer isn't terminal  unless it is not discovered until late stages and you have jaundice and itchy skin. It is really important to stay positive in order to get the best results. I say this with some knowledge as in addition to me having Carolis disease my husband has oesophageal cancer, he has just finished chemo, and will be having a major operation ot remove part of his oesophagus on July 30th. The oncologist has congratulated him on remaining so positive as a result of which he has had almost no side effects, and the surgeon has said he is likely to have a good result from the operation because he is so positive.  This is all really important because he is my carer - I am a wheelchair user and without him, I would have to go into a nursing home.  You can cope if you think positive, rather than thinking the worst. 

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  • Posted

    Hi Dawn,

    Hang in there. As Gill (great feedback!) mentioned - it's super helpful to stay positive. Reach out if you need any support. 

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  • Posted

    I was having some pretty intense itching and a little jaundice (barely can tell in eyes if you know to look...and even then hard to tell). My liver enzymes were sky high. I DO NOT have liver cancer. After my high numbers I was sent for an MRI. My liver was enlarged with 2 cysts. After I saw a specialist I found out I have PBC (primary biliary cholengitis). It is not a death sentence. It can be treated....treated not cured. They say most with PBC patients die with it...not because of it. I know it's scary. Just step back...take a breath and try to think clearly. If you need to chat I'm here.

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