Fibrolamellar hepatocellular carcinoma - aged 26

FormerMember
FormerMember
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I have recently been diagnosed with this rare form of primary liver cancer, which I have been told is currently inoperable. I started chemotherapy last month but I have not had much success in finding information on this particular type of tumour. Does anyone have any experience of this type of tumour and its treatment? Thanks
  • FormerMember
    FormerMember
    hi my name is annmarie and my dad ha allso just been told that he has primary liver cancer to. and they allso cant operate or do treatment if you find any thing out it would very much help me thank you annmarie
  • FormerMember
    FormerMember
    Hi Sarah and Ann Marie

    My son developed at FHCC aged 19. What hospitals are you under, because I was wondering whether another surgeon may be prepared to operate? Because of our geographical area, we were put in touch with the top liver specialists in the country, and although there are never any promises, my son had an operation to remove half his liver, followed by chemo to reduce the remaining tumour (although they were not sure if it did reduce) followed by another operation. In all he had 7.8ths removed. If you would like any details, please contact me and I will give you what I can. I know that there is so little known about this cancer. I've been trying to find out more and so far have only heard of one other person who has it in this country.

  • FormerMember
    FormerMember
    Hi Karenne and Ann Marie Thank you for your responses. Karenne, your son is the first person I have heard of who has the same type of tumour (except for statistics) so I am very interested to hear about his treatment. I live in London and was an inpatient at Kings College Hospital for almost a month whilst being diagnosed. I have been told that the tumour is currently too large to remove. Do you mind telling me how big your son’s tumour was initially? I am interested to hear that he had just part of the tumour removed initially. Unfortunately I have an added complication, which is that because of the tumour, I developed a massive blood clot in my right leg and had several pulmonary embolisms. As a result, I have been on blood thinning injections for the past four months and am at risk of developing new clots if I come off them. The catch 22 is that I cannot have any surgery if my blood is being thinned. For the time being, I am on chemo – I’ve had four cycles and have my first CT scan next Monday to see if the tumour is shrinking, so fingers crossed! Anne Marie, I am sorry to hear about your dad. I’m afraid I have not found any specific information on FHCC, but I have found a good website for general information on liver cancer and treatments: www.livercancer.com. Sarah
  • FormerMember
    FormerMember
    Hi Sarah

    My son was diagnosed with liver cancer nearly three years ago at the age of twenty three. A third of his liver was affected but unfortuately it had also spread to both lungs where he had eleven tumours. We were told this type of cancer was very rare for someone of his age. He had undergone chemotherapy and radiotherapy and had just started a second course of chemo when he sadly he passed away peacefully in August this year after a two and a half year battle. The tumours in his liver and lungs were always described as 'inoperable' and despite desperately trying to get more help for him, there was never much hope and the prognosis was grim. They call liver cancer the silent killer because it creeps up on you without any symptoms or warning in fact my son was actually being treated for a stomach ulcer at the time he was diagnosed. Good luck with the treatment.

  • FormerMember
    FormerMember
    Hi Lynnette

     

    I am so sorry to hear about your son, my thoughts are with you.  I have recently come across a useful US-based website for families and patients affected by this form of Liver cancer, which you may be interested in. It is deLIVER a Cure for Hepatocellular Carcinoma: www.deliveracure.org

     

    Sarah

     
  • FormerMember
    FormerMember
    Hi,i have only just found this site and what a surprise it is to hear of other people suffering with the same disease as myself,especially considering its so rare!Well i would like to give a glimmer of hope to everyone as i was diagnosed in Jan 2000 and im still here fighting on.Ok,its not been all plain sailing,75%of my liver removed secondary nodes on my lung,7 years of constant 6months on,6 months off chemo but hey whos complaining im still here!!Please all stay strong,it does help to be positive and never give up hope.Ive just been told my cancer is starting to grow again so its back on the good old chemo.Fingers crossed!!
  • Hi, I know I’m a bit too late in replying but my son has just been diagnosed at 18 - what chemo did they use ? Good bless you and your family