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  • November 29, 2015 at 2:37 am #90510
    hercules
    Moderator

    Hello Cait, I am sorry to hear you are dealing with this at such a young age, I hope your treatment goes well, I have no experience to share with that procedure, but I can wish you the best, remain positive, Pat

    November 28, 2015 at 11:27 pm #90509
    lainy
    Spectator

    Cait, WELCOME to our remarkable family and the best place to be for CC support. We get upset at every new DX but when it is someone your age we also wonder how and why!
    I commend you on your attitude. The Family here knows how much I tout a sense of Humor. Honestly it will get you through anything. My husband and I spent 5 years of comedy with this nightmare. And now I use humor for almost everything.
    How ironic that you were traveling and ended up at Barnes as they are one of the tops in the CC field.
    I also laughed at your naming the tumor! GREAT! I had a colectomy in April and my daughter named my Stoma Orville as he does a bit of popping and hissing! He has become my best friend.
    I assume you live out East?
    We are big believers of 2nd and 3rd opinions even when you have been to the best. Different eyes and minds see things differently.
    Read up as much as you can as knowledge is our best tool for fighting CC. One might say you have joined a very elite club but we are sorry you had to.
    Below is a site you may find helpful and so looking forward to your next post. A big hello to Tim and he better know he is not going to be with you long!

    http://cholangiocarcinoma.org/newly-dx/

    November 28, 2015 at 10:59 pm #90508
    scott-sibley
    Member

    Hi Cait, sorry you needed to find this site, but you are in the best place for those of us with CC.
    Your story sounds just like mine. I went to the hospital Sept 7th with acute pain under my ribs the day after an huge, late night feast on some junk food. I was thinking gallbladder, but the ct scan the next day found a 13 cm mass on my liver.
    I was 2 months getting the cc diagnosis, and I just finished my first cycle of chemo last week.

    The people on this site are the greatest. I came here feeling alone and scared. These folks made me feel welcome, and now they are a big part of my kill cancer team.

    November 28, 2015 at 10:51 pm #90507
    surfer1
    Spectator

    My husband had a portal vein embolization in January 2014. It was a fairly uneventful procedure. One night in the hospital. Not too much pain. Best of luck to you.

    November 28, 2015 at 10:17 pm #11886
    Cait
    Spectator

    Hi everyone, my name is Cait, and I was just diagnosed this past Tuesday with Cholangiocarcinoma. This is all very new, so I’m learning some of the terminology/treatment/etc, but I wanted to get a post up quick to introduce myself and share what’s going on in my world.

    I’m an otherwise fairly healthy 28 year old with no history of liver issues, and until last weekend no symptoms. My husband and I were traveling for the Thanksgiving holiday when I started to feel pain in my right side. It wasn’t major, and we’d had White Castle, so that was the obvious culprit…only the pain didn’t go away. By Sunday night I was experiencing pain with movement, and Monday morning we decided to get checked for peace of mind (at this point we had redirected the blame from the White Castle to my appendix, the second most obvious villain).

    A CT scan at our small, local hospital revealed a healthy appendix and gallbladder (#3 on the list of suspects), but a 9 cm mass in my liver (not even in the top 10). We were then moved to Barnes Hospital in St. Louis, which is fabulous for anyone who might have cause to travel there.

    At Barnes I underwent a battery of blood tests, an MRI, an hepatic artery embolism to stop some minor bleeding that had popped up, and a biopsy of both the tumor and the healthy tissue. It was Tuesday evening that we received the preliminary diagnosis of Cholangiocarcinoma, which the medical team gave with a greater than 90% certainty based on the blood tests and MRI.

    I have a followup appointment in Western New York Monday and a tentatively scheduled portal vein embolism Tuesday followed by chemo. End goal is to remove Tim (we’ve named the tumor, it’s helping me stay light hearted about this mess) with a clean bill of health, but we have a long road ahead of us.

    There is so much more to the story, some good, some bad, but this is post#1, and I don’t want to scare anyone off, so I guess I just want to say hello and see if anyone has some quick and dirty advice for a newly diagnosed member of this community.

    Any advice and any experience with portal vein embolisms is so greatly appreciated as that’s our next hurdle.

    Thanks in advance for the advice and support, and it’s nice to meet you all,
    Cait

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