*CC DIAGNOSED on 10-17-16* Need Answers for My Dad Please!

Discussion Board Forums Introductions! *CC DIAGNOSED on 10-17-16* Need Answers for My Dad Please!

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  • #82307
    marions
    Moderator

    Keshia….I am so sorry, somehow I must have missed your introduction and your cry for help. Pathology reports can be inconclusive, but you may want to consider having it read by a pathologist very familiar with this cancer. Please know that second opinions have become “somewhat” of a standard of care. I would advice you to search out an institution treating a high volume of cholangiocarcinoma patients. Does your Dad live in Atlanta as well? If so, you may want to reach out to the Emory hepatobiliary unit.

    Hugs
    Marion

    #82308
    keshia
    Spectator

    LornaK thank you so much for taking time to reply. I truly appreciate it. I made notes from your post. We are still waiting on an appointment. I am so frustrated.

    #82309
    lornak
    Spectator

    Hey Kay. Sorry you have had to find this site and I am sorry about your dad. My dad also has CC and was diagnosed a little over a year ago. The biggest suggestion I have for you is to push for the oncologist to do genetic testing. If they can identify the mutations that are in the cancer they may be able to pinpoint a specific treatment that will be impactful. For example my father has a mutation in mLh1 which means his tumor has microsatilite instability and he qualifies to get the drug Keytruda. If they hadn’t done the genetic testing we would never have known about this mutation and this drug.

    *My dad was not eligible for resection because the tumor encases his artery. He has gem/oxy and a hepatic pump with FDUR. Then he had radiation. Now he is getting Keytruda. It has been a long year.

    Best of luck.

    #9968
    keshia
    Spectator

    Hello!
    My name is Kay! I am trying to be proactive in finding out as much as I can along with the correct questions to ask the doctor due to my Dad’s recent dx. I am so happy to have found this site, but not happy I had to. So here is my Dad’s story thus far:

    In 2015 after a CT SCAN and Ultrasound came back with something noticeable on the bile duct, he was then scheduled for at ERCP. The ERCP came back blocked. The Dr. could not get through.

    _ No follow up_

    In 2016 during routine physical, it was noticed that no follow up came from the 2015 report, so a new ERCP was ordered and the Dr. still could not get through the bile duct, so my Dad was referred out where one stint was placed for drainage, which was removed 2 weeks later. The doctor tried to get back in the bile duct but could not, but was able to get some tissue for biopsy. He was told the same day that preliminary report show it was cancer. Bile Duct Cancer.

    The pathology report came back inconclusive that it was cancer. My dad has now been referred to a oncologist. We are waiting to hear back for date and time.

    I read here that it is normal for pathology reports to come back inconclusive. I would just like to gain as much knowledge as I can. PLEASE the hard, honest and difficult truths that are out there. Please give it to me straight. I NEED ANSWERS……NEXT STEPS…..QUESTIONS I CAN ASK…. Thank you so much in advance, and I look forward to many responses. Thank you.

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