Discussion Board Forums General Discussion Need to hear your experience urgently for bileduck cancer…

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  • #32796
    betsy
    Member

    Hi friends4ever,

    I was diagnosed with intrahepatic CC in Dec. 08 and had a liver resection in Jan. 09. Since my tumor was located inside the bile duct in my liver, my entire right lobe and part of my left lobe were removed. The surgeon also performed a Roux-en-Y which involved cutting and re-routing my intestines. I had no cancer in my lymph nodes or other organs. Given my age (48), overall good health and location of the tumor, I was a good candidate for a liver resection. I had an absess form in my abdomen and a tear in my bile duct which kept me in the hospital for 21 days. I can go on and on with details but don’t want to bog you down with too much information. 10 months after my surgery, I’m hanging in there and overall feeling pretty good. CC is a terrible disease but there are treatment options which can give you reason to be hopeful. The liver is the only organ that can regenerate itself and you only need a small portion of healthy liver for it to do that. My surgery was performed by Dr. John Fung of the Cleveland Clinic. If you are near Ohio, he is an amazing surgeon and one I would certainly consult.

    Since I have been a patient and not a care-giver, I can only tell you my feelings about having this cancer. Its been an emotional tornado that has totally turned my life upside down and right-side up. I never mind being asked how things are going for me and am eager to discuss my health and this disease but worry that I sometimes suck all of the air of out a room. Some people really don’t want to know all of the details, they just want to hear everything will be fine and I’ll never be sick again.

    You are a wonderful, brave friend. Your friend is fortunate to have you as an advocate. The results from you friend’s chemo are very encouraging. I sending you prayers and hugs from Cleveland.

    Betsy

    #32795
    gavin
    Moderator

    Hi Friends 4ever,

    Just wanted to join Lainy and Marion in welcoming you to the site, although I am sorry that you have to be here. I cant help you with your questions regarding surgery as my dad was diagnosed with inoperable CC so he never had surgery. As Marion says, it does indeed sound like your friend is responding well to the chemo and hopefully this will continue through to her next CT scan in January.

    It also sounds to me as if you are doing a great job in supporting your friend in being there for her and your anger is a very normal emotion and yes, none of this is fair at all. It does sound like your friend is dealing with this in her way and I’m sure that if she wants to open up some more then she will. My mum doesnt talk or like to talk too much about my dads CC etc, unlike me who does like talking about it as I like to know whats going on and try to understand more about everything. Just keep being there for her and supporting her as I know she will appreciate your support.

    No apologies are ever needed for feeling down, angry or for ranting away, we’ve all been there before! I hope you will keep coming back here as you will get loads of support from a friendly bunch of people who have been and are going through what you are.

    My best wishes to you and your friend.

    Gavin

    #32794
    marions
    Moderator

    I would like to follow Lainy in welcoming you to our site. Your best friend appears to be responding well to the chemotherapy and hopefully, a removal of the tumor (resection) is possible. Presently, this is the only hope for a cure for this type of cancer. The type of resection will depend on the location of the tumor. If located inside the liver (intrahepatic) it will involve removal of a portion of the liver. If the tumor is located near the joining of the bile duct (perihilar) then the surgery will depend on the extent of the spread of the cancer. Tumors located below the right and left hepatic ducts involve removal of the extrahepatic bile ducts, the lymph nodes, and the gallbladder. Distal bile duct cancer is treated with a Whipple resection. This surgery is the same operation performed for cancers located in the head of the pancreas. Here the first portion of the small intestine is removed, the head of the pancreas, the gallbladder, and the common bile duct.
    The diagnoses with this cancer is always difficult to accept however, you are doing all the right things by supporting your friend. Most likely she is dealing with her cancer in a positive way with the hope that she can be cured. And, that has happened. In the meantime your support will mean much to her.
    We have, on this board, Dr. Giles. He is a psychologist with a tremendous amount of experience and he is available to all. You might want to reach out to him, also.
    Of course the members on this board are incredible supportive to anyone touched by this disease whether the patient, the caregiver, the friend, a family member, etc. Your questions and comments including, rants and raves will always find a caring ear.
    All my best wishes,
    Marion

    #32793
    lainy
    Member

    Hi friends4ever and welcome to our little world. We are very sorry to hear about your best friend. Your reactions are normal with this monster of a disease but it does sound like her doctors are on the right track. I can’t tell you about the surgery as my husband’s CC is not in the liver, but I am sure someone will post and help you out. In the upper right hand corner of this page is a Search button and you can put in anything and hopefully get some answers as well. Try to read up as much as you can on past posts as well. Perhaps you can ask your friend if she would talk to you about the cancer. I find that talking really helps and the more you talk the more you understand. Perhaps she would find our site comforting as well. Good luck and please keep us posted.

    #2848
    friends4ever
    Member

    Hi all,

    First of all I wish you all the best and thanks for reading my post.

    My very very best friend same age as me 38 and with a 3 year old kid like mine has been diognassis with a bileduct cancer metastass to liver in June.Stage IIIB: The cancer has spread to organs near the liver, but has not spread to nearby lymph nodes or other parts of the body (T4, N0, M0).

    Since then having chemo for every 2 weeks and 1 week of.Had a scan in the beginning of October and they said it is schrunk incredible and will have the second sessions of chemo’s until mid Jan then a CT scan again to see if it can be operatable.

    My question is; What sort of operation is that and what is the chance of getting rid of all?
    I love her to bits and I am there for her everyday with my best strengh…I do keep myself very very normal outside to her and support her but I have no idea how to deal with it myself as she is a sister to me and my heart goes for the little one. The bad part is she was a pshycologist in the hospice herself so she knows more then us. In the meantime she doesnt speak much about it and talks it like it is a flu….Do I need to talk openly with her or just follow her emotions?

    I am so upset and ANGRY as you may all know how I feel.It isnot fair on her and to the little one.I have a 3 year old to myself and no idea what can we do if we loose her. Please tell me the honest stages what we will be facing and how can I help her more.If I could give half of my organs I could to her and I could have give her all my life if I wouldnt have my own daughter…So Sad..

    Sorry to sound so down…I know that so many of you have options that are working! Good luck to all of you and you are in myur prayers.
    Keep fighting the good fight!
    Healing thoughts,

    Thanks

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