Cholangiocarcinoma

Comment

Comment by Rebecca Ruehl on July 13, 2011 at 10:01pm

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?

 

Rebecca