Re: Advice to a young man/

[Guest guest]

Since Mark very kindly ran through the whole story with me a month

ago, here are the message numbers where he described his story and

responded to my questions about CCA: 79351, 79341, 79333. I am very

grateful for his perspective. I learned about the risk for CC a few

years ago. I fired my then-GI because he never told me and didn't

perform MRCPs or ERCPs. But if I'd known, would I have been scared off

starting a family? Mark is right, enjoy your health!

The difficulty with CC is that it can be really hard to distinguish

from ordinary PSC fibrosis. The neoplasms often are surrounded by

fibrotic tissue and may not reach the wall of the bile duct. Nor do

they readily show on MRIs. But I have a suspicion, that like colon

cancers, CC may start slow before it gets out of control, and if you

are lucky enough to catch it early, the Mayo protocol can work very

well, as we hope it did for Mark.

I talked with my GI about my own concerns re cholangiocarcinoma. He

thought a case like Mark's was unusual in that CC developed in an

asymptomatic context. That said, he is concerned enough to want to

repeat ERCP biopsies in 4-5 months, in the context of my relatively

mild stage I-II fibrosis and longstanding PSC.

Martha (MA)

42, UC 1979, PSC 1992

> If I run through the whole story again these people are going to kill

> me. If you have specific questions let me know and I'll be happy to

> answer.