I'll head down the route of seeing if I can get more blood screens, just to watch for spikes in LF as well as more follow up with Mayo.  I'm already on Mayo's screen, having been one of Dr. Lindor's patients when he was just starting to make a name for himself twenty years back.  I believe he is only doing teaching/research now, no longer seeing patients.  But he was responsible for making Mayo-Rochester the premier PSC institution.  I've been a patient in a few of their studies including the DR3 link with CC and the current gene-search. 

Any idea who was providing PET's for $1,600?  That's about 80% less than my local clinic charges my PPO.  With my deductible at $2,500 per year, and $300 month in out of pocket meds and co-pays on top of $750 per month in premiums, it's getting a little tight to have money left over to feed the kids.  Saving a few bucks would be useful.

When I asked he said, "They are not good tests", and was going to have his nurse get me more info.  As usual, I didn't see the follow up info.  Small hospitals, gotta love em.  I suspect Schulick's article would be the main reason as it's publication coincides with when my Hep started getting cagey about the CA19-9 tests.  I understand Schulick's is a metastudy that verified the low reliability of CA19-9 at predicting CC, while it is effective at verifying ongoing CC.  With my complications from diabetes and NALF in particular, dramatically increases the production of alpha-fetoprotein as the liver & pancreas attempt to regenerate/repair.  CEA also is a poor marker for pre-metastized CC, but is effective for validation.  So the short statement, blood markers are not effective at finding early CC after the liver is as damaged as mine is.  Of course, my MELD is only 11.  No, no, never mind daily pain, severe fatigue, mild hepatic encephalopathy and intermittent asterixes, astices and cholangitis, I'm not sick enough yet...  I do wish UNOS would modify their rules for PSC/PBC.  Or else, I'm just eating a bottle of Tylenol and dialing 911, that'll get a liver for me. [sarcasm]

He also disagreed on more than annual CT/PET scans.  Getting my insurance company to sign on for more than one per year would be a fight, and I'd need him on my side.  Plus, that's a lot of milirads - when you are worried about cancer, where is the line between utility and risk?

A second opinion on the CT/PET is problematic.  There is one hepatologist in a 100 mile circle, which makes sense since we have no active liver transplant center.  My GI is in the same clinic as my hep, and defers all liver questions to the liver expert.  My internist is horrible, I only see her b/c my insurance company requires an internist or general MD as primary caregiver.  I am within an overnight drive of Mayo Rochester, which is a fine CC and PSC institution.  I can certainly badger my hepatologist into referring me there for a second opinion, but I'm not sure of the benefit.  I'd like more frequently screening, but I don't know if any screening is effective.

My hepatologist recently said we would not do any more blood screening for CC.  Does anybody know the best-practices around this these days?

My CC risk factors are very high.  I've had PSC without transplant and without remission for 20 years.  I had ulcerative colitis, with a colonectomy in 2001.  I'm also caucasian of Irish descent, HLA DR3.  These factors all correlate with high CC risk.  The only way I can conceive of increasing my risk for CC is if I added alcoholism, liver flukes and a diet rich in thallium.

We had been testing for CC with biannual fetoprotein and CA19-9.  Although I am not obese (BMI=22), I developed NALF and Cushing Syndrome / Type II diabetes about three years ago.  The conditions likely evolved due either to chronic liver disease, or 20 years of on and off prendisone.  These conditions caused both fetoprotein and CA19-9 to no longer give normal results.  We've moved to once a year CT & PET scans on a 64 slice MRI.  The doc doesn't want to screen more often than that.

I'm concerned because my hospital is a small regional that has little experience with liver transplant and CC.  Is there anything I can ask my physician about/for that will increase my odds of early detection if CC develops in a case complicated by PSC, NALF & diabetes?