Discussion Board Forums General Discussion so much trouble with diagnosis and so treatment hasn’t started yet – normal?

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    Hi Mims1924,

    Your wife Jeanne is having quite an ordeal in getting to a firm diagnosis and treatment plan.  I know this is beyond frustrating.  I hope the upcoming surgery gives a resolution so that she and you can move forward to effective treatment.  Apologies for sounding like a broken record on this point (sometimes responses get repetitive but I try and think about other folks who read the board postings), but if the mass is determined to be cancer and a tissue sample is taken, please be sure to ask Jeanne’s doctor about molecular profiling.  There are new treatments in development and available through clinical trials and other means that can benefit cholangiocarcinoma patients who are known to have specific genomic defects discovered through profiling.

    Cholangiocarcinoma can be nightmarish to diagnose for many patients.  It can hide in bile ducts, and frustrate attempts to have good imaging or take biopsies.  But unfortunately, doctors cannot treat this cancer until they know its dimensions because the treatment options can go in very different directions.  They need to determine the feasibility of (or rule out) surgery, different radiation options and chemotherapy.

    If after open surgery, you and Jeanne feel doubts about the diagnosis or treatment options, a second opinion might be considered.  Your doctor will support your interest in a second opinion and may help you pursue it.  Another second opinion option is to look at the provider map available on the Cholangiocarcinoma Foundation website which can help you find experts in your area.

    Please stay in touch with our community, and best wishes that Monday’s surgery goes well.

    Regards, Mary


    I’m posting for Jeanne, my wife.  She became jaundiced in mid May and has been through 2 ERCPs and one laparoscopic surgery with no definitive diagnosis of cancer.  She clearly has a mass that is blocking her bile ducts and it looks to everyone like a Katskin tumor, but no tissue has shown evidence that can be used to begin treatment.  The laparoscopic surgery was supposed to at least sample lymph nodes but the samples were not lymph nodes, so we don’t have any information about spread of the disease.  Monday she’s scheduled for an open surgery to get a definitive biopsy for diagnosis and staging.

    Is the typical for cholagniocarcinoma?

    We are scared and wishing that treatment has started and still hoping against all odds that maybe the diagnosis will be something else.

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