Topic: New member -- Wife recently diagnosed with ICC
My name is Jason, and my wife Andrea was diagnosed with intrahepatic CC on April 1. It is amazing how much our lives have changed. I think we are both still in shock and somewhat in denial...
Andrea is 45, very healthy and has no symptoms at all. That is the good news. The bad news is that she had a routine blood test back in November 2012, that turned up some slightly elevated liver test numbers. After a number of tests and retests, we finally had a CT scan that showed a liver lesion and then a biopsy that indicated upper GI adenocarcinoma. That was the news that arrived April 1.
Since then, we have had a PET scan that indicated it was very advanced in the liver (multiple tumors with the largest 8.5 cm), but had not spread beyond the liver. Andrea is getting treatment at Stanford, and she has started on gem/cis (2 weeks on / one week off), and has now completed the chemo for two cycles.
I have tried to research as many options as possible, but Andrea is not a good candidate for most. Here is what I have pursued so far:
Resection -- not a candidate given the central location of the tumor and the involvement of both lobes.
Proton beam therapy -- This looked promising, and I contacted Dr. Ferrone at Mass General, but Andrea is not a good candidate because the number and aggregate size of tumors is too large.
Transplant Mayo -- Mayo clinic has a transplant protocol, but after talking to the
researchers there, I understand their protocol is only for hilar CC. (Dr. Heimbach was very kind with her time here btw)
Transplant UCLA -- Actually, UCLA is one of the few places that will consider transplants for ICC. Again, the extent and the potential involvement of a vein meant she was not a candidate at this time.
Radioembolization -- We finally hit a procedure that seems to help people with Andrea's cancer profile. Both the fact that she is healthy without symptoms and that her tumors are more peripheral instead of infiltrative seem to be characteristics associated with good outcomes.
Our current plan is to see how chemo is working and then probably do the radiation at some point. I understand that surgical removal is the only current cure, so I just hope somehow some of the therapy can facilitate surgery...
We have two wonderful boys (age 14 and 12), who would be devastated to lose their mom. Too terrible to even think about that.
Anyway, I am very thankful to have found this site. After spending a few days here, I can tell there are many knowledgeable and caring people. I have a number of questions, and hopefully I can benefit from your experience. This disease sometimes seems so very dark, it is hard to even get your mind around it.