First post past frustrated to desperate

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.

Melinda

Hi-

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,
Catherine

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 to.be 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.