Do most CC patients have PSC

Karen, I was a mechanic for a regional park system which operated a tree sprayer which applied DDT in the 60’s, we blew leaves in the fall with this old machine into the nineties, however it is difficult for me to relate that to my cancer. The man who ran it, handled the chemicals and breathed it regularly didn’t get cc, I worked in a body shop before that as a floor sweeper and while dumping trash I got paint on my hand so I went to the paint mixing room, there were drums of thinner with little spigots on them, I took a shop rag and wet it with laquer thinner and while I was wiping my hand with it an old bodyman/ Painter named Frank,a great guy with wonderful stories, says to me “don’t do that or you’ll need half your liver out someday”. I listened and avoided contact with thinners thereafter. 30 years later, while laying in a bed at cleveland clinic after surgery to have half my liver out his words came back to me, a crazy coincidence or did old Frank know something about this? Pat

My mother-in-law is another person who received a diagnosis of stage 4 CC with no predisposing factors, or comorbidities.

She was accidentally sprayed with a DDT type mosquito spray in the late 1970s though, which is what she believes caused her CC to appear 30 some years later. I wish we knew why it happened, which is I think, something that many of struggle with.

When my sister had her initial ercp for the apparent gallstone causing her jaundice, the surgeon suspected she might have psc (there never was a gallstone). When the brushings showed CC they investigated further for PSC but there was no indication she had it and it was ruled out.

I can’t vouch for its accuracy but here is a link to an article that discusses risk factors for cholangiocarcinoma. It says that about 10% of CC patients have previously been diagnosed with PSC. My reading on CC is consistent with Eli’s statement that most CC patients do not have any confirmed risk factors.

http://emedicine.medscape.com/article/365065-overview

Rose, my dad never had PSC either.

I’m quoting from NCCN Guidelines for Cholangiocarcinoma, one of the most definitive medical resources on CC.

The section on risk factors says:

“No predisposing factors have been identified in most patients diagnosed with cholangiocarcinoma, although there is evidence that particular risk factors may be associated with the disease in some patients.”

This is consistent with what I read in many other medical articles. Most CC patients do not have any known risk factors.

It’s true that PSC is a strong risk factor for CC, but I think it’s wrong to say that most CC patients have it.

Cathy, I bumped and updated my original post in the transplant section.

Yes, Rach, PSC presents with one of the accepted risk factors for Cholangiocarcinoma and that is the major reason for our partnering with the PSC foundation. It is interesting, Rachael, that you were not aware of it prior to the diagnoses of CC.
Hugs,
Marion