Discussion Board Forums General Discussion How did the discover your CC?

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    My husband had what they dx as reflux for years and treated with tecta. January- May 2016 appatite decreased and gradual increase in feeling of fullness and by june bis weight loss. Lab work showed elevated liver enzymes, followed by ultasound and ct that lead to ICC dx. I agree the disease likely was years but significant symptoms did not happen until late stage unfortunately.


    Wife had abdominal pain for quite awhile. She’s always had gi issues but attributed to holiday over eating. She started to diet down to fix her gi issues but it didn’t help. Finally babhnsitter mentioned it sounded like gal bladder issues. So she went into have that checked. The. Had biopsy scheduled and days before got jaundiced. Been a roller coaster since.


    My husband had abdominal discomfort for 6 weeks before seeing a nurse practitioner on Halloween 2016. She ordered blood work, which showed elevated liver functions. They did an ultrasound, which showed a calcified gallbladder, with stones. He was scheduled to have his gallbladder removed, but his bilirubin was spiking so they figured a stone must have gotten out of the gallbadder and was blocking the common bile duct. They did an ERCP instead and discovered a tumor in the CBD. They did brushings and “bites”, which indicated cholangiocarcinoma.


    Mom was having mild right side abdominal pain so Dr. looked for signs of appendicitis and the mass was seen on her liver. Took nearly 2 months for a biopsy to confirm ICC.
    PET showed mets to spine and skull.


    Thank you! We did consult with COH, too far. We will also visit USC. I checked the integrative services and unfortunately not covered by insurance which is ridiculous. Why should cancer patients be covered for chemo and radiation which also kills normal cells, but nutrition for the body has to be out of pocket. I disliked that part of UCLA, again about profits. Money is not a factor for her, but I thought to mention this for other people. Again, we don’t want chemo right now, will that change? I don’t know. That’s it with this condition, a lot of unknowns.


    I am still baffled and stunned by this disease my mom was diagnosed two months ago. I had to look for a cause, not just it popping out of no where. I looked up her medical history and noticed two years ago an abdominal ultrasound and the liver showing moderate intrahepatic biliary dilatation and year after that another abdominal ultrasound showing same results. The first time the primary physician (no longer the doctor) didn’t take it seriously and said she was fine, no further evaluation needed. The second time since her liver tests were normal wasn’t pursued again, until an MRI was requested to look at her cause of anemia, the liver mass alerted doctor that this is serious, led to ERCp, and now here.

    It made me wonder how people learn about this when it is advanced or too late. But how does one really know how long it’s been in the body. IT looks like she has had this in her body for 2.5 years, now I wonder was the tumor smaller or same size. I just don’t believe all of a sudden in a matter of a couple of months someone has this cancer.

    How did yours get discovered?

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