Seeking Advice

Cathleen Mary
Cathleen Mary CSN Member Posts: 827 Member
in Colorectal Cancer #1
Last summer, I was diagnosed with autoimmune hepatitis. This seems to be complicating my CRC follow up. My CEA, previously dependable for me, appears no longer so. I have been told my slowly rising CEA is due to the hepatitis. Scans of my liver are also confused by the hepatitis. I am concerned that what I previously depended on no longer serves me well and the hepatitis will mask a recureence. I do have a good team at Mass General, including a liver speciatiist. I am still learning about autoimmune hepatitis. Am I overreacting? Any advice or questions I should be asking?
Thanks so much...I have come to rely on this wise, experienced, and helpful group.

Cathleen Mary

Comments

  • Lovekitties
    Lovekitties CSN Member Posts: 3,364 Member
    #2
    Dear Cathleen Mary
    So sorry to hear of this complication. Can you tell us how they determined that you have autoimmune hepatitis? From the little I have read it seems the only sure way to know the difference between this and mets to liver is with a biopsy.

    Are you being treated for AH? If so with what?

    I can certainly understand your concers regarding the reliability of tests given this added issue. I am glad to hear that you feel you have a good team of docs working with you on this.

    I wish I had answers or suggestions for you, but am woefully ignorant of this subject. Perhaps with a bit more research I can find out more.

    Prayers for you as you move forward,

    Marie who loves kitties
  • Cathleen Mary
    Cathleen Mary CSN Member Posts: 827 Member
    #3
    Lovekitties said:

    Dear Cathleen Mary
    So sorry to hear of this complication. Can you tell us how they determined that you have autoimmune hepatitis? From the little I have read it seems the only sure way to know the difference between this and mets to liver is with a biopsy.

    Are you being treated for AH? If so with what?

    I can certainly understand your concers regarding the reliability of tests given this added issue. I am glad to hear that you feel you have a good team of docs working with you on this.

    I wish I had answers or suggestions for you, but am woefully ignorant of this subject. Perhaps with a bit more research I can find out more.

    Prayers for you as you move forward,

    Marie who loves kitties

    Thanks, Marie. Yes, the

    Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

    Cathleen Mary
  • maglets
    maglets CSN Member Posts: 2,576 Member
    #4
    Cathleen Mary said:

    Thanks, Marie. Yes, the

    Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

    Cathleen Mary

    sorry
    Oh Cathleen Mary....so sorry to read this news. I too know nothing about AH but I wanted to drop you a note to say I will be thinking about you and sending a prayer or two.

    I am sure this news must be very difficult to absorb......

    best love,

    mary margaret
  • dmj101
    dmj101 CSN Member Posts: 527 Member
    #5
    Cathleen Mary said:

    Thanks, Marie. Yes, the

    Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

    Cathleen Mary

    Cathleen Mary, I agree with
    Cathleen Mary, I agree with Mary Margret.. what is with the sisterly names I keep reading tonight..
    I wanted to say I will look into this I have never heard of this before..if I find anything I will let you know..
    Sorry it must be fustrating to have little knowledge of what you have.. take care...
  • LivinginNH
    LivinginNH CSN Member Posts: 1,456 Member
    #6
    Hi, try to get Dr. Kenneth
    Hi, try to get Dr. Kenneth Tanabe for any liver surgery at MGH - he's one heck of a surgeon, and known world wide
    Will chat more later by PM.

    Luv,
    Cynthia

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