Discussion Board Forums Introductions! Not sure where to turn

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  • #93830
    marions
    Moderator

    Christina…thanks for the explanation. You may want to consider consulting with a specialist outside Ireland. Take a look at the AMMF website http://ammf.org.uk/

    Helen provides a list of centers and specialists focused on this cancer. You may also want to contact her by e-mail.

    Hugs,
    Marion

    #93829
    christina77
    Participant

    Hi,
    I cant thank you all enough for replying and for the good advice. It is really hard to know what to do right for wrong. I cant even imagine how my mum is feeling inside, I can only imagine it comes in waves.
    Just in answer to questions and apologies also I am still trying to work out best ways to use the forum when replying, not sure to post or mail but will work it out.
    Needless to say JUST THANKS.
    My mum was unwell from about 2009, (consistently told it was gall stones), had gall bladder removed in 2011 and then liver resection end off 2011 (a tumor was found in gall bladder). Then check ups thereafter at different hospitals. In October 2015 she was was feeling really unwell and vomiting a lot, this was diagnosed by January 2016 and she had a bowel resection due to a blockage in the bowel.
    In September 2016 she began feeling really unwell again and we went to GP a lot, she was told it could be diverticulitis, tried different diets, we felt incredibly lost as did not know how to help her or where to turn. You may gather from this my mum has met and been supported by some exceptional medical professionals but also had the polar opposite experience which is unfortunate.
    So thank you Marion, Joe and Lainy for responding and in answer:
    Surgery is currently not being offered
    Her next appointment is two weeks time (a scan as of two days ago was cancelled as the stent so recently inserted and she was still in hospital)
    Have signed up to the clinical trials sites and am in touch with specialist nurse
    I will check link now Marion
    Would you all know of any European centres of expertise I could contact?
    Again thank you and goes without saying any advice much appreciated, best wishes.

    #93828
    marions
    Moderator

    Christina….you and your family are not alone. A cholangiocarcinoma diagnosis can bring us to our knees, but we soon pick up the boxing gloves and move forward. You will do the same.

    Based on your location I assume your Mum is being treated at Belfast Health and Trust, which according to the description is familiar with biliary cancer.
    http://belfasttrust-cancerservices.hscni.net/Surgery.htm

    Has the option of surgery been discussed?

    Hugs
    Marion

    #93826
    jpmski
    Participant

    Christina,

    This is a rare and in some ways very unique cancer. What I would impress upon you is time, you can’t afford to get put on regular medical schedule, “The doctor’s first availability is six weeks…”

    That doesn’t work for you. This a very aggressive cancer and you need as much information as fast as you can get it.

    You definitely want multiple opinions on this, especially when it comes to surgery. Good luck.

    Joe

    #93827
    lainy
    Participant

    Dear Christina, Welcome to the best place to be for CC support. So sorry to read about the diagnosis of your Mum and that you had to join our elite group. We know that when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that will be very useful in helping you to get through this first part of the journey.

    Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

    Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangio.

    Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor should mind you wanting more opinions.

    Please keep us updated on Mum’s progress and know that you are not alone in this new family.

    #12907
    christina77
    Participant

    Hi, first just glad to have found this forum and I see how supportive everyone is of one another, despite what they or their families are facing, so thank you in advance for anything really.
    Basically my mum has just been diagnosed with intraheptic cc, (it is a rather long story which I will post next time). This happened a few weeks ago, felt like the world was coming off its axis really.
    She was jaundiced and a stent has been placed in bile duct which seems to have taken, she is due to see oncologist at end of January 2017. I really hope to be in contact with some of you and any advice is welcome. I hope today is a good day for you all also.

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