Discussion Board Forums Introductions! Labeled with Intrahepatic Cholagiocarcinoma

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  • #100763
    Sistersuz
    Participant

    Hi Cheryl,

    Never stop fighting for your health!  I’m on the same chemo drugs and with my last CT scan was told my cancer had stabilized (prior to yesterday’s MRI-still waiting to hear what that shows).  I, too, have lost a lot of my hair which I had shaved off close to Thanksgiving.  It is growing again, tho sparse.  I’ve chosen to just wear hats.  I pray that Mayo’s can take care of you or direct you to a surgery center with excellent doctors.  I’m in Wisconsin and looking at my options in Chicago, if need be.

    Stay strong, girlfriend!

    Sistersuz

    #100760
    Kristenhall
    Moderator

    Hello!

    I am so sorry to hear of your diagnosis.  Know that you are surrounded with support and hope in this group!

    My father has CC and his moto during it all has been ” stay strong and positive!”  So you’re in the right spot to stay connected to all of us here who have been a part in some way of this journey.

    I would agree with Mary, and I’m sure my father would agree too, that multiple opinions are important as well as finding a team of doctors who deal with this specific cancer.  The CC Foundation website is a great tool to use!  And as I said, we’re all here to help you and we’re all in this together.  Please know we are all pulling for you and here to help!

    Take care, Kristen

    #100759
    Bighorn67
    Participant

    I’m sorry to hear about your diagnosis.  Mine wasn’t as big of a shock to me since my family has a deep history with cancer.  I’ve been fortunate that my oncologist referred me to one of the best surgeons out there who was able to get all of the tumor out.  I had a different surgeon say that he wouldn’t attempt the surgery.  It was really scary to hear that.  Let your oncologist know that you want to see the absolute best surgeon he can get you to.  Preferably at a major cancer center.  Surgeons at that level can do amazing things.  Keep the faith and stay strong.

    #100756

    Hi it was just about the same day I was diagnosed with IIIB cancer. I am supposed to have my scan in a few weeks. It is scary. I have been on cisplatin/gemzar and had 2 cycles. I went to the Mayo clinic and U of M and got different answers about surgery from both. I got offered two different trials and in each trial the drug was randomized and I ended uo getting standard of care. Not what I hoped for. The U drs just feel I am not going to make it but Mayo gives me hope. I don’t want to stop fighting. Mayo did 2 biopsies on me and didnt get enough tissue to check for markers. This whole process for me has been one bad result after another. Yet I still feel good. I have tolerated the chemo with no difficulty. Sad as a lot of my hair fell out. Hang in there. There are alot of immunotherapy drugs. Treatment options. If I can’t get surgery I am hoping for chemoradiation. It is all such an unknown. Well thanks for listening. Cheryl

    #100755
    Sistersuz
    Participant

    Hello Mary,

     

    I am seeing a liver specialist, but not at a major cancer center.  I have not gotten a second opinion yet.  My oncologist had the genomic profiling test done on me shortly after my diagnosis.  I’ve never had a major sickness and just feel kind of lost in all of this.

    I do feel hopeful, more so since I hear yours was a success.  I’m just anxious waiting…and reading what I can about this surgery.

    Sistersuz

     

     

    #100751
    bglass
    Moderator

    Hi Sistersuz,

    Welcome to our community, but I wish you had not received this diagnosis.  It sounds like your doctors have a treatment plan in mind – are you being seen at a major cancer center with experience with our rare cancer?

    It is important to seek surgical opinions from one or more highly experienced liver surgeons.  In my own case, I was diagnosed with a large (about 10 cm.) intrahepatic tumor that straddled both sides of my liver.  I was initially told it was inoperable, but a second surgeon (a liver transplant surgeon) thought it was worth trying to do the surgery.  I had a less usual type of resection called a central hepatectomy which removed the middle of my liver but left the two ends.  If the tumor is too close to major veins or other essential GI geography, the surgery might not be possible, but a tumor one surgeon thinks cannot be removed, another might see as operable.  Because my tumor was large and had several bad features, I was sent for both chemo and radiation after surgery.

    My surgery was five years ago, and things seemed pretty hopeless in the early days after diagnosis.  But, gratefully, I have been cancer-free since that time.  Since my diagnosis, many new treatments have come online for our cancer, and more are being developed each year.  There is always reason for hope.

    Some of the new treatments are based on genomic mutations associated with our cancer.  It is important, if you have not done so already, to ask your doctors about genomic profiling (biomarker testing) to see if any new treatments can be options for you now or in the future.

    Please stay in touch and send any questions our way.  I hope you have found all the good information available for patients on the Cholangiocarcinoma Foundation website.

    Take care, regards, Mary

     

     

     

    #100750
    Sistersuz
    Participant

    Hello!

    I am from a family that lives many years, most members dying around 100 years or more.  I’ve always teased my son that when I’m 105 he’ll need to take care of me.  September 21, 2020 changed all that when I was diagnosed with Stage 3 Intrahepatic Cholangiocarcinoma.  I never really wanted to know what would be on my death certificate, yet this is what I feel it will be.  I’ve had 3 rounds of chemo and will have an MRI the end of this week, a surgeon visit and oncology visit next week.  I am hopeful that I can have surgery but have been told the mass is in both lobes and therefore they won’t be able to remove all of it (my initial consultation).  I have faith in my surgeon and oncologist that they have my best interest at heart.  Are there any specific questions I should be asking my surgeon?

    Sistersuz

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