PSC and CC

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  • #59592
    marions
    Moderator

    twoforjoy….. The Cholangiocarcinoma Foundation has listed the PSC Foundation as partner. http://www.pscpartners.org/ you might want to take a look.
    Both diseases present with similar symptoms and it is of utmost importance to consult with a specialist treating PSC and CC patients. I would make the appointment with the Mayo Clinic regardless – if need to you can always cancel.
    Hugs,
    Marion

    #6605
    twoforjoy
    Member

    Figure I’ll just dive right in with the questions.

    As I said in my introduction, my DH right now is facing a possible diagnosis of PSC, CC, or both. He had an MRCP and ERCP a few weeks ago that found a 3 cm stricture in his common bile duct (which was stented, although the stent doesn’t seem to be working all that well) and evidence of PSC. The brushings from the ERCP were “suggestive of cancer,” whatever that means.

    But, as of now, he has neither a PSC or CC diagnosis. His discharge sheet from his inpatient stay lists PSC as his diagnosis, but it hasn’t been confirmed since then. (The medical people we’re dealing with are just not very communicative, even when I ask tons of questions.)

    He met with a surgical oncologist last week, and he had said that he’d never worked with a patient with both PSC and CC. That surprised us. I’d assumed that, given the high prevalence of CC among PSC patients, and the low incidence of CC overall, anybody working with CC patients would have seen people with both conditions? But, I guess not.

    Anyway, my question is how important it is for DH to work with somebody who has experience with both conditions. He sort of feels like, since this guy has seen CC before, he’s fine. I feel like he should be working with people who have experience dealing with CC in the context of PSC.

    What I’m asking, I guess, is how much the PSC would matter if he’s dealing with CC. Does it make a significant difference in treatment?

    Thanks. I hope I’m not asking too many questions. It is just so hard to find information about this, and most of what I’m finding is not particularly encouraging.

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