Do most CC patients have PSC

Discussion Board Forums General Discussion Do most CC patients have PSC

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #72573
    hercules
    Moderator

    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

    #72557
    marions
    Moderator

    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.
    Hugs,
    Marion

    #72572
    karend
    Participant

    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.

    #72571
    hercules
    Moderator

    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.

    #72570
    clarem
    Participant

    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.

    #72569
    lisacraine
    Participant

    I don’t have PSC. My doctor said my CC is just plain bad luck.
    Lisa

    #72568
    lindar
    Participant

    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

    #72567
    Eli
    Participant

    Patrick,

    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.

    But:

    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.

    #72566
    gavin
    Moderator

    Rose, my dad never had PSC either.

    #72565
    hercules
    Moderator

    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, Pat

    #72564
    Eli
    Participant

    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.

    #72563
    hercules
    Moderator

    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.

    #72562
    rach883
    Member

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

    #72561
    jathy1125
    Participant

    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-Cathy

    #72560
    marions
    Moderator

    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

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