Cholangiocarcinoma is cancer of the bile ducts. I have been told I have abnormal cells. They have been evaluated by three Cytologists who agree they are abnormal because they are missing chromosomes, but not cancerous.
I am going to have the tests repeated at Mayo Clinic in Rochester, Minnesota. Have any of you been diagnosed with abnormal cells or carcinoma? What did the doctors do? Did it move you up on the transplant list?
Thank you for the help.
Paul - my husband Scott has PSC (just recently diagnosed in March). He was itchy for over a year and had his gallbladder removed. When that didn't work, we kept working with doctors until we found one who diagnosed the PSC. He had his first ERCP on June 1 (doc said he didn't like something on the MRCP). He had 2 strictures, both stretched and biopsy taken. First results were negative. Second (and FISH) results were suspicious of cancer.
We have been through a roller coaster of emotions. After 3 excruciating weeks, we had 1 day of transplant workup and met with the transplant surgeon. After yet another week of thinking and discussing (by them - not us!), they said his CA19 wasn't high enough to warrant a cholangio diagnosis. Say what? We are just so confused - they want to redo the test in 3 months and see what it shows.
Doc said Scott would be a 7 on the MELD score (due to PSC and his present counts). A confirmed diagnosis of cholangio would move him to 22. Each 3 months on the list adds another 3 points.
Transplant isn't easy. Just 1 day of testing almost sent us over the edge. The transplant coordinator said the protocol for transplant is very, very attention-specific and that it is 1 step forward, 2 steps back. Also, that each step that moves him closer to transplant (ie tests or procedures) are evaluated by the team before he goes to the next step.
And he feels really very fine, other than fatigue at various times. How about you?
I am going through the same thing. I have tested positive twice now, but it is not cancer yet, and they say they want to do a third test in a few months. It seeems like they should be doing something now, not waiting to test me in a few more months...what if I get cancer by then and it will be too late to do a transplant? I've been going out to Mayo, and have been pretty satisfied with them up until now. What happened with you guys...I see this post is a few years old. How did things turn out for you?