Discussion Board Forums General Discussion recently discovered CC

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  • #100241
    Frank99131
    Participant

    Dear Mary, Thank you very much for your kindly reply. I am still shocked after 2 days of knowing my father´s diagnosis, my family kept me unknowing of this for arround 2 weeks. I was not really open to my father at any feelings, not like to friends, i think it is typical chinese father and son relationship, but he really is the most important person in my life, i am scared that he will just leave us in all of a sudden. He did his first chemo yesterday, he seems to be fine but i do not know how he really feels and he does really talk about his feeling.

    I hate that i could not help myself to cry when i think about that he is suffering from this disease at the moment, and i did not know anything about it, could have cared more for him.

    Thank you for your invitation to the upcoming Annual Conference, although i think there will a language barrier, but i will try to learn more about it.

    This forum is really helping me, thank you all for your kindness and compassion. Hope you all healthy and happy with your friend and family.

     

    #100235
    bglass
    Moderator

    Hi Frank99131,

    A warm welcome to our community.  I am very sorry that your father has received this diagnosis, and cannot imagine your frustration that COVID-19 circumstances keep you from being by his side.  I hope he is feeling well and receiving good care.

    Most cholangiocarcinoma patients have no apparent risk factors.  We hear from many patients who practiced healthy lifestyles and did not expect to be diagnosed with a rare cancer.  Also, in its early stages, cholangiocarcinoma can be symptomless, so it may not be discovered until it is more advanced.

    Cholangiocarcinoma can be really variable from one patient to the next.  The statistics given are averages, and not very applicable to an individual patient.  It is important to be sure your father’s doctors have experience with this cancer.  The genomic testing will open the door for new and emerging treatments being developed for patients whose cancer shows specific genomic defects or mutations.

    There is a wealth of good information on the Cholangiocarcinoma Foundation’s website for patients and caregivers.  I also invite you to register for the Foundation’s upcoming Annual Conference later this month.  The Conference will be virtual this year, and you can learn a lot about this cancer and its treatments from world-class experts by dropping in on conference sessions.

    I hope you can find ways to stay close to your father through video chats and other electronic means during this difficult time.  Please stay in touch with us and send any questions you have our way.  Regards, Mary

    #100231
    Frank99131
    Participant

    Hi, everyone, i am from China, my father was diagnosed with CC recently, i still can not believe this happened to him, his health was just fine and he does not drink or smoke, he lived a really simple but healthy way of life. But the doctor told me that his CC is not operable, we are waiting for the genetic result. The worse part is that i am not arround him, i am stuck in brasil and couldnt buy ticket to fly back due to the COVID19.

    I am really confused how this could happen to him, i made some research on internet, is it really that CC patient has at most one year to live?what should i do to make him get better ?

    First time ever i felt helpless at another end of the world. Thank you all for your attention. hope all your friends and families healthy and happy.

    • This topic was modified 1 month, 2 weeks ago by Frank99131.
    • This topic was modified 1 month, 2 weeks ago by Frank99131.
    • This topic was modified 1 month, 2 weeks ago by Frank99131.
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