Re: New to the group/

[Guest guest]

While it's nice that you've had limited symptoms a much bigger concern

is the risk of cholangiocarcinoma, a bile duct cancer for which the

risk increases as time with PSC goes by. While it seems to happen

sporadically, the majority of cases seem to occur after one has had PSC

for greater than 15-18 years. With you having had the disease for 22

years your risk is becoming significantly higher. This doesn't mean

that you will inevitably develop CC, but your doctor should be checking

for it. The tough part is that there are no really good ways to detect

it with 100% accuracy. ERCP with bile duct brushing combined with MRI

and/or serum cancer markers would be the best investigative measures.

As for completely avoiding transplant, you're probably too young to

have that happen. Having developed PSC in your 20's it is most likely

you will live long enough to require a tx.

Aubrey, MD

PSC '81, UC '90, LTX '98, Recurrence '05