June 2, 2013 at 3:04 pm #72573
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? PatJune 2, 2013 at 4:19 am #72557marionsModerator
Hercules….In comparison to five years ago, research into this disease has increased drastically. And, we continue to push forward with encouraging research by funding grants and actively engaging with the research community. We are positive and hopeful for things to continue to improve.
MarionJune 2, 2013 at 12:46 am #72572karendParticipant
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.May 31, 2013 at 10:31 pm #72571
Most the things I read was 5 or more years ago. It may have been old medicine even then. They really dont know much about what causes it. Seven years ago they asked me some crazy questions like “did you ever use intraveineous drugs ?” I don”t like it when a doctor comes at me with a needle never mind turn one on myself, so they don’t have a clue. I just hope and pray we get some breakthrough soon to help all the people on this site that so need it.May 30, 2013 at 9:58 pm #72570claremParticipant
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.May 30, 2013 at 3:59 am #72569lisacraineParticipant
I don’t have PSC. My doctor said my CC is just plain bad luck.
LisaMay 30, 2013 at 3:21 am #72568lindarParticipant
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.May 30, 2013 at 2:58 am #72567EliParticipant
CC has a long list of known risk factors. PSC, liver flukes, hepatitis B/C are at the top of the list.
People who have PSC…. or liver flukes…. or hepatitis B/C… are more likely to develop CC than an average healthy person.
It doesn’t mean that every CC patient has a known risk factor. Most CC patients have what doctors call a sporadic disease. They don’t have any confirmed risk factors.
My wife got diagnosed with CC at age 44. We don’t know why she got it. She was never diagnosed with PSC, or hepatitis, or liver flukes, or anything else.May 29, 2013 at 6:52 pm #72566gavinModerator
Rose, my dad never had PSC either.May 29, 2013 at 11:50 am #72565
well Eli, I suppose liver flukes aren’t a factor either if no predisposing factors exist? I read this in an american cancer society report, I did not compile that stat, just read it in a report that sounded rather authoritative at the time.My oncologist also stated PSC is a known risk factor.I have tried to educate myself about this disease and most studies I have seen indicate this, PatMay 29, 2013 at 2:11 am #72564EliParticipant
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.May 29, 2013 at 1:39 am #72563
Some information I read 7 years ago listed PSC as a major factor in the formation of cc, and it said at that time 55% , over half of cc patients have PSC. it was theorized that the bile duct scar tissue is a pre cancerous condition, making the formation of this cancer more likely. I have PSC as found in the pathology report after my surgery, that is why this caught my attention.May 28, 2013 at 11:57 pm #72562rach883Member
Cathy, I bumped and updated my original post in the transplant section.May 28, 2013 at 11:31 pm #72561jathy1125Participant
Rach883, I would love to know more about your story. I am a CC survivor due to 2 liver transplants. I am curious how you got a transplant 2 months after diagnose. Did you not have to do chemo, radiation…
Thanks for sharing, we need more positive transplant stories on our site.
Lots of prayers to stay healthy-CathyMay 28, 2013 at 11:28 pm #72560marionsModerator
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.
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