Re: Questions about CA 19-9/Nina

[Guest guest]

Dear Nina,

I don't think you should worry about ongoing CA19-9 testing getting

him booted off the transplant list, because if they find cancer at

transplant, they won't transplant him anyway. Instead, CA19-9 testing

is part of a CCA monitoring program (and ONLY a part, because it's

neither sensitive enough to detect all CCAs and it's not specific

enough to mean that an elevation of CA19-9 is due to cancer). What Dr

Gores recommended in the summary of the review that I posted was, for

asymptomatic patients, looking at periodic MRCPs and watching for

increases in CA19-9, and then doing bilary biopsies by ERCP if there

are concerns from either of the first two. CCA tends to show up in the

sickest patients- because that's when they look the hardest, and the

cancer may be what's causing the strictures. All we can do is look

harder, earlier. All the more reason to fund research on PSC! One

positive note is the Scandinavian study posted a few months ago,

showing that the longer people were on high-dose urso, the less common

CCA was.

Please, everyone, be aware that CA19-9 testing is useless in about 7%

of patients because they lack the genetic ability to make the antigen

that the CA19-9 antibody recognizes. To learn if you are one of them,

ask your doctor to determine your Antigen phenotype using a test

called " Red blood cell phenotype " . This needs to be done only once in

your life. If you are not Le-a or Le-b positive, then CA19-9 testing

is a complete waste, you will never be positive.

Martha (MA)

>

> This is pretty disturbing to me, especially since my husband just

> took a CA19-9 test at my urging. My understanding was that it is

> NOT diagnostic of cholangiocarcinoma, and my thought on pressuring

> my husband to do this was to get an idea of where his tests are -

> and I was assuming they'd be elevated, because I thought they become

> elevated regardless of the presence of cholangiocarcinoma in PSC -

> and then keeping track of them so that if we see any unexplained

> spikes at some point hopefully far, far down the line we can go in

> for another MRCP or do some brushings or something. This makes me

> think this was a very bad idea. Has anyone else heard of someone

> getting booted off the transplant list for a raised CA19-9 result?

> Thanks,

>

> Nina

>

> >

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