First post past frustrated to desperate

Discussion Board Forums Introductions! First post past frustrated to desperate

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    I too, welcome you to these discussion boards. Please seek another opinion with Vanderbilt as Marion suggested. It is so crucial to see a team who have experience with cholangiocarcinoma. Request your records be sent asap. Please keep us updated on your husband’s progress and let us know if we can help in any way. We are all here to support you. Take care, hugs and prayers sent your way.



    Hello and welcome to the best place to be for CC support. I did write to you but it is gone, so hope I can remember what I wrote. Welcome also to our remarkable family. I would definitely get a second opinion and make sure that where ever you go has had a lot of experience with CC. Where is hubby being tested? All you have to do for another opinion is hand carry the test and LAB results with you. What have they done for testing? As for pain management there is no reason to have pain and I suggest you tell the ONC that the pain is getting worse. For nourishment you might try Carnation Instant Breakfast. My husband loved the vanilla and I would blend in a banana. The shake can take the place of a meal or have it with a meal. You can even have it 3 times a day. It has all the things one needs. Below is a site you may find helpful and please keep us updated so that we are able to help you. You never know how strong you are until “strong” is the only choice you have!



    Welcome to our group. We were fortunate with Mom in that the local hospital knew they were out of their league and surgery for ICC was scheduled at UMD within 4 weeks of diagnosis (but they are partners with county hospital).

    Although a different cancer,Dad was admitted Dec 29 at local hospital,and after a week of testing at local hospital, I reached out to Johns Hopkins. Since the surgeon agreed to take him on, within a day he was transferred by ambulance, with all records,and was having scans the same day (at midnight- Hopkins does not sleep). We did not start over. However, I think it is easier to be transferred if already admitted vs as an out patient.

    So sorry you are going through this and thought and prayers are with you,


    I would also like to welcome you to our group, Tnmikishell. You have come to the right place to get information and support. We believe very strongly in getting a second opinion from a medical center that has expertise in Cholangiocarcinoma, as they are far better prepared to aggressively treat CC with the latest and best treatment protocols.

    I wish you and your husband all the best. Please keep us posted.



    Hi, I just wanted to add my 2 cents worth. I started at a local/community oncologist /cancer center. From the CT finding the tumor to the end of local testing was two weeks. At that point, I was getting nervous and decided to make my own referral to Mayo Clinic in Rochester, MN. I was given an appt two weeks out, which also made me nervous. Once I got there though, with my hand carried scans on CD, the biopsy slides already sent there by the local hospital, and results of all blood tests given to them verbally, things went very quickly. I met with an oncologist for most of a morning…..he went over my history again….and looked into the possibility this may have been a different primary cancer that had metastasized to the liver…..and then he set up a consult with a surgeon for later that day at 430 p.m. The surgeon said she was sure of what it was….CC…..and that she could remove it. By the next day at noon I was in surgery having part of my left liver lobe and a 5 cm tumor removed.

    Things don’t always move that fast. I was told that the month from finding the tumor to surgery was actually moving fairly fast considering that I started here locally at a community based treatment center. I have since had a recurrence of the CC, and once again was okayed for surgery (Dec 2015), but had to wait a bout 3 weeks before I could get on the new surgeon’s schedule….mostly due to him being scheduled for vacation during the last week and a half of that time. But still, it was relatively fast. I had a friend here who recently had a gall bladder removed with constriction of some bile ducts and she couldn’t get a surgery date for over a month at the University of Iowa hospitals. It seems forever to us, I know.

    So, I guess I’m saying not afraid to go somewhere else. If they have to redo any testing S….it’s more than likely due to the original testing being in question, but I don’t think it’s going to stretch out at a big center where they are more familiar with CC.

    Pain should not be tolerated. Talk to your doctor about getting your husband something for the pain he is experiencing.

    Best wishes to you. Once you get things squared away, it’s going to feel some better…..that you are being proactive and actually DOING something. Sitting and waiting is the fodder for anxiety….I know…have been in that place many times.
    Julie T.


    Tnmikishell…..welcome to our special group. Where is your husband treated and what tests are outstanding? Vanderbilt has a robust hepatobiliary department, hence I would make sure to make contact with that institution.


    My husband was diagnosed with bile duct cancer in December of 2015. We are still undergoing tests to see if he is eligible for a resection. In the mean time his pain is increasing he is loosing more and more weight and nothing has been treatments yet. I am scared witless afraid if we change doctors this process will start all over again

Viewing 7 posts - 16 through 22 (of 22 total)
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