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  • #98007

    Hi Jules

    I am sorry to hear about your friend. I am based in the UK and had the molecular testing done, which led me to a clinical trial that I am currently enrolled to. I have sent you a personal message with more information.

    All the best, Alena.

    #98004
    bglass
    Moderator

    Hi Jules,

    It is wonderful to hear from you.  You are correct in noting that, thankfully, science and medical practice have evolved for patients although there is still much work to be done.

    I am not very familiar with the medical system in the U.K., but I do know that some of the top experts and ground-breaking research are present there.  I can make some observations on what is generally important for the newly diagnosed.  There is also a big section of the Cholangiocarcinoma Foundation website devoted to information for newly diagnosed patients and their caregivers, which should be helpful as well.

    As to important concerns at the time of diagnosis:

    First, this cancer remains a rare one, and it is complex.  It is imperative that patients see doctors with experience with cholangiocarcinoma, as you are already advising your friend.

    Second, if the cancer has not spread beyond the liver/bile duct geography, it is important early on to get an expert opinion from an experienced liver surgeon about whether surgery (usually liver resection or whipple) or liver transplant is recommended.  In the U.S., we unfortunately see that not all patients whose cancer is operable are sent for surgery.  Also, knowing whether surgery is an option is important so that patients don’t have steps taken or start a treatment that would end up disqualifying them from an opportunity for surgery or transplant.  Finally, in recent years, new local treatment regimens have come available for cholangiocarcinoma confined to the liver but not able to be removed surgically.  (Some examples include TACE, Y-90, and radiation.)

    Third, treatments are starting to come on-line that target genomic defects present in some cholangiocarcinoma patients, so patients and caregivers should raise genomic testing with their doctors.  There are materials on the CF website that explain this emerging area of cholangiocarcinoma treatment in laymen’s terms.

    Your friend is so fortunate to have you in her court helping her cope with this diagnosis.  Time is of the essence in getting treatment figured out, and for most of us the enormity of this cancer news and the complexity of the medical world make it all the more daunting.

    Regards, Mary

    #97995
    jules
    Participant

    I haven’t been on this board for many years… in Sept 07 we lost my dad, at age 63 to this insidious disease.  At the time this board was a huge resource, source of comfort and support.  I am sorry that emotionally I didn’t feel able to continue to linger on the site, I remain devastated at losing my dad to this disease relitively young and there isn’t a day that goes by when I don’t think of him.

    I am back here again because a friend of a friend, and, a neighbour of ours has recently been diagnosed with chilangiocarcinoma.  I haven’t come across anyone else with this condition since our experience and I am extremely upset for the family (young woman with 3 young children).  I have already passed information re professor lodge, I am hoping he can help, they have the referral now in hand and I need to get up to speed quickly re developments in treatment since we were in this position.

    Am I correct in saying molecular testing is the major development? Who do I need to speak to in the UK re this?

    It would be really helpful to hear from anyone with experiences in the UK, specifically those seeking aggressive treatment, this lady needs to survive this, as a young mother, she has so much to live for and it is truly devastating to see such a lovely family in this position.

    thank you all so much

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