Discussion Board Forums General Discussion Wikipedia and cholangiocarcinoma – what do you think?

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    This site and forum is so welcoming and so important for those diagnosed and those supporting family and friends who receive the diagnosis – mine in November 2009 followed by a whipple op.
    Before arriving at this site or AMMF in the UK I guess that a majority may put cc into a search engine and arrive at the Wikipedia page. For me this was one of the most difficult reads ever and I am wondering what others found of the experience?
    Some phrases on there were really difficult for me – not the medical facts – but particularly the couple of sentences with:-

    Cholangiocarcinoma is considered to be an incurable and rapidly lethal disease……There is no potentially curative treatment…Patients with cholangiocarcinoma are managed though never cured with chemotherapy,radiotherapy and palliative care’

    For anyone newly diagnosed these words take away any sense of optimism for the way forward. They led me straight to palliative care as being just around the corner.
    I post this on a morning when we have just booked a one month trip around Holland, Germany, Switzerland, Italy and France for September. What I wanted to read about were the things found by my daughter – of marathons run, of gardens tended, of trips made, mountains climbed or time spent with family and friends.
    In this month of awareness of cholangiocarcinoma – what should we do about the Wikipedia page?

Viewing 16 post (of 16 total)
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