Just Diagnosed

Discussion Board Forums Introductions! Just Diagnosed

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  • #101297
    bglass
    Moderator

    Hi Gambogi1,

    Welcome to our community.  I am sorry to hear about your diagnosis, and am hoping you get good news from the surgeon that your tumor is operable.

    I have posted a lot about my own history on this board, which started very similarly to what you describe.  The first surgeon who looked at my case (single large tumor confined to my liver) said the tumor was too large to be removed.  Then one of my doctors contacted a liver transplant surgeon who thought he could get the tumor out.  That was six years ago.  I had radiation and chemo after surgery and have so far been free of the cancer, gratefully.  The Cholangiocarcinoma Foundation website has a provider map that can help you identify experienced surgeons in your area.  Resection surgery for cholangiocarcinoma is complex and requires an experienced liver surgeon.

    If surgery is not possible, patients may be offered chemotherapy which for some patients can shrink the tumor to a size that can be removed.  There are other localized treatments possible when the tumor is only in the liver and has not spread, which have shown positive results.  Hopefully your doctor can discuss these different options with you.

    I hope you have found the many resources for new patients on the Cholangiocarcinoma Foundation website.  Especially important is the information on genomic profiling to identify if your cancer has any treatable mutations.  The science for our rare cancer is evolving quickly and new targeted treatment options have been approved or are on the horizon for our patients.  Please be sure to discuss testing for genomic defects (mutations) with your doctor.

    Cholangiocarcinoma is definitely a scary diagnosis no one wants to hear, but in your situation there are good treatment options.  I hope your doctors come up with a positive treatment plan for you.  Please stay in touch and send any questions our way.

    Take care, regards, Mary

    P.S.  Adding a citation that discusses liver-directed therapies that can be used when the tumor is confined to the liver when surgery is not possible.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5411273/

     

     

     

    • This reply was modified 1 month ago by bglass. Reason: Added article citation
    #101295
    Gambogi1
    Participant

    Hi everyone,

    I’m new to the club no one wants to be in. I was diagnosed Wednesday the 15th with a large tumor in my left lobe. My pet scan has shown it is contained to my liver. My doc called that he wants me to meet with the surgeon after the tumor board met. I hope this will steer me on the road to recovery. I know it will not be easy, and I am terrified. By I am 42, not ready to leave my kids yet, so I will fight this with every fiber of my being.

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