How Were You Diagnosed?

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    I’m a similar case as LisaS’s. Dark urine, every other bowel movement was light, and man was I itching (only had a high of 3.5 on bilirubin though). Bloodwork Thursday, Friday Dr. called and said you need to get in to do more bloodwork, did it, but never got the results. Sunday at 2am checked in to hospital on doctor’s orders (he knew something was up, still no confirmation) and they did a CT and Ultrasound on Sunday but saw nothing. Monday afternoon, ERCP and a stent and voila! no symptoms any more. However, there was a 0.5cm x 0.5cm x 0.75cm mass on my bile duct. They pulled samples, but they came back ‘atypical suspicious fibrous cells’. I was on a plane to NY on Labor day of ’11, 4 days after the pathology came back. We originally had the biopsies going to Harvard but had them redirected to Sloan Kettering. Met with Dr. Weiss and Dr. Jarnagin at Sloan Kettering, both said even if biopsies came back negative, they wouldn’t believe them. Wasn’t officially diagnosed until 5 days after resection.

    And I didn’t have a lick of pain either, probably because of the small size of the tumor. At the end, besides the itching, dark urine, and stool issues, everything I ate would cause me to be nauseous, probably because of the elevated bilirubin levels. I’m officially 2 years and 8 months clean. Posting on my recent ‘astimosis due to scar tissue’ travails in another post momentarily…


    Cathy you are one tough cookie! You are also very Lucky that you got diagnosed so quickly. This is so rare that most people and even lots of Drs don’t know what cholangio is, Thank goodness we have this forum , I know that without stumbling on to this site My Husband would not be being treated by Dr. Chapman. We are so glad that we contacted Dr Chapman one yr ago. Long story short, my husband is on the list for a transplant liver at Barnes. I realize not every case qualifies for transplant but in our case, he is stable enough to benifit with a new liver. Thank God and Thank you Cathy Oh and Dr Chapman.


    I always credit a new neighbor/friend for saving my life, she asked if I had been in a car accident because I had so many sores from scratching. I look back and realize there was a lot of signs I also ignored. I own a lawn care company and work outdoors, just thought it was heat, allergies….that made crazy itchy (no bristles left on my hairbrush, forks, knives…) I was also over weight (even though, I had been excersicing eating better and being healthier and losing weight the last 8 months) so I chalked all the nausea, heartburn, shoulder pain abdominal pain to being over weight. Her comment is what made me go to doctor. I was very blessed that since my regular doctor was on vacation I ended up with a very knowledgable doctor who did one ERCP and came out and said “I know what I saw, I know it will come back a false negative and her only HOPE is a liver transplant”! I had my diagnose and cure in 5 minutes very very rare for our cancer! More interesting is my tumor was only 2cm.!!
    I am excited to say I am 22 days away from the 5 year cancer free day!!!
    There is HOPE!!!
    Thank you God, 2 strangers and Dr. Chapman for giving me this post!!!


    Margaret and Darla…..this will be my shortest post ever. Same here….every other cancer eliminated and this was the last one standing. Wasn’t confirmed until the pathology of the tumor and liver after surgery.

    Julie T.


    I have to agree with Margaret as it seemed the same with Jim. First all other causes were eliminated, then after they suspected cancer, all other cancers were eliminated before finding that it was only in the bile ducts.


    Me again.

    Just want to add that my husband’s cc: was never directly discovered. He was diagnosed by eliminating virtually every other cancer through the tests.

    I assume this means that it was so embedded in the bile duct that it couldn’t be seen by any of the usual testing/biopsy means.




    Thanks for this thread. I go over what may have been symptoms all the time in my mind.

    Some itching in the spring, but not so extreme it caused concern. Then it went away on its own.

    At the time, we suspected nothing more severe than his annual allergies, with stuffy nose, drainage in his throat, coughing. It was a bad allergy season last spring, so it didn’t seem unusual.

    He had a few stomach events — some apples that didn’t agree with him. Some nuts that upset his stomach. Some fish that upset his stomach. A few bouts of diarrhea. That was over the course of the year prior to diagnosis.

    He was feeling some back pain. But then he’d ridden bikes all his life and had had a few wrecks. Had worked construction as a young man and had some back issues from that. Was in a desk job and had to commute so thought he wasn’t getting enough back strengthening exercises.

    What got his attention: Went to dr for the worsening allergies in mid-August and was diagnosed with pneumonia. Blood tests showed nothing to be concerned about. One week later his stomach blew up like a balloon — extreme ascites. That was the beginning of all the ABC tests. The tests continued for four weeks, including at MD Anderson with Dr. Javle.

    Biopsy turned up tumors on the liver, Catscan showed a small spot on his lung, other tests — mets throughout the peritoneal fluid and cavity. He was diagnosed Aug. 26 and died Oct. 24.

    In hindsight, I wonder if these events individually were signs of the cancer, or if they were, some or all of them, individual illness events like all of us have now and again. Or has the cancer been there since the time I met him in 1975 when he got what we thought was food poisoning in the college dorm cafeteria from some ham that he ate?

    How do we explain cases like the 12 year old boy in California who recently died of the disease?

    From the variety of all our experiences, I guess what we do know is that more medical knowledge is needed. As others have said, it’s a sneaky cancer, until it smacks us over the head. I hope and pray for a screen someday to save lives. For now, I am grateful for this forum because sharing information will lead, I believe, to answers.

    Wishing each and every one of you a good day. My thoughts and prayers go out to all!



    I think the more we know about this disease the less it makes any sense. My husbands liver enzymes were always normal until near the end. He was what we thought was health except that he was starting to tire more easily, and started to have pain in the upper right abdomen. After 5 trips to the ER, several misdiagnosis and all test imaginable he was definitively diagnosed as having interhepatic CC contained to the bile ducts only 10 days before he passed away.

    As Lainy put it, all we know for sure is that we don’t know much, or enough. Hoping that this keep changing and that in the future we will have more answers and better ways of early detection.


    I went from 173 pounds to 153 pounds in about three months. I attributed that to working night shifts, 8-12 hours a day, 5-7 days a week. (PCP had run routine tests about 7 months before which showed alk-phos about 700 but he didn’t press the issue. Thought I was probably taking too much Motrin.) Billi was ok but I was jaundiced with dark urine. Some abdominal pain and shoulder pain. Went back to PCP with weight loss and he sent me for colonoscopy (which was negative) and a CT scan. Confirmed with biopsy. The rest, as they say, is history.

    My best advice for coping with this is that you must keep a positive attitude about life. This means that the people you keep around you must also be positive. It also means that you may be forced to put space between yourself and Eeyores who will drag you down if you let them. Kind of like the old saying: “Whether you think you can or you think you can’t, you are right.” – Henry Ford


    Crissie, unfortunately all we know for sure about CC is that we know not much. Everyone is truly different in how they get CC, how their treatment goes and how they were diagnosed. I know it doesn’t feel like it but we are making some strides and are beginning to be noticed now in many ways. When we started this site 8 years ago all we had was each other. Now we have some fabulous Doctors very interested in us, some great research is going on and in the end we WILL kill this Monster. We ARE being noticed!


    Crissie…I forgot to say that my liver enzymes were right smack in the middle of normal…as they always have been…..and I get the blood drawn and tested at least twice a year for other reasons. For intrahepatic versions of CC, we rarely have any symptoms at all…not even the jaundice /itching…until it is usually late stage 4. Even my C19-9 test after the tumor was found was right in the middle of normal range…so we can’t really use that to show if my cancer is returning. My tumor grew part of a cm between when it was found and a month later. If I had any symptom at all, it was that I would get full faster when I ate, in the month and a half before I was diagnosed..but I had been dieting for a year and a half, so that wasn’t suspicious. I also did notice my urine sometimes was pretty dark in the month before I was diagnosed..and it gave me pause to wonder, but I wasn’t drinking enough either, so when I increased my liquid intake, that went back to normal. One other sign….was that I had a spontaneous diabetic low sugar event (43…very low…took 3 hours to get it to go up to 100 and stay there). I later discovered that that is a sign of liver cancer…esp in diabetics. My blood sugar stayed way down….almost normal until I had surgery to remove the cancer….and then it started creeping back up as I recovered….behaving more “normally diabetic.” Anyway…thought I should add these “signs”, which weren’t much for signs at all.


    So basically there are no “set” symptoms. Even drawing liver enzymes doesn’t seem to be conclusive as some have normal levels.

    I am so paranoid about this since my dad just passed from it. I know it is a maybe maybe not but I am an analytical mind that can’t deal with that.


    I had a sore spot on the right upper side of my stomach which I discussed with the doctor during my annual physical examination in April, 2013 – No real pain or other issues involved so we completed the physical and thought no more about it – Additionally, the usual blood work was done and showed nothing unusual – Three months later I accidentally hit the spot with a golf club and suddenly realized the sore spot had developed into a fairly large, pronounced lump – Called the doctor who examined the lump the same day, immediately scheduled a CT scan which showed the tumor intertwined around my liver, and then immediately scheduled a biopsy which then resulted in the Stage IV unresectable Cholangiocarcinoma diagnosis – Diagnosis was made in August, 2013 and Gems/Cys chemotherapy (once a week for two weeks and third week off) was begun shortly thereafter and has continued on that schedule right through the present – Two additional CT’s (another CT is scheduled next Monday) have shown the tumor to be stable thus far and it is our plan to continue with the Chemo for the forseeable future –
    I am 81 years old and have been as healthy as a horse my whole life – I have had no other symptoms, have had absolutely no Cholangio symptoms at any time, have had no side effects (with the exception of some occasional minor fatigue) from the chemo have had the wonderful care of my wife, five children and eight grandchildren – Although I was obviously not thrilled with the Cholangio diagnosis it has brought home to our family the importance of counting our blessings and appreciating each other on a daily basis and for that I am truly grateful –


    My wife had slightly elevated liver function numbers. rechecked the tests every month for a couple of months with the numbers getting worse. Got an ultrasound where the GI doc misread the ultrasound report which cost us a month.

    Finally after being unable to find any other cause, a CT scan was ordered which identified very suspicious lesions. A biopsy then confirmed intrahepatic CC. Initial suspicious blood work was Nov. 2012. Diagnosis of ICC was April 2013.



    Mark had what I was sure was gallbladder attacks, right upper abdominal pain that came and went along with some burping. His last attack was a year ago. PCP worked him up for gallbladder and found nothing. We went to the ER for left upper back pain that we thought was a kidney stone and the CT scan showed a mass at the junction of the bile ducts. We were still working that up when he turned yellow (glow in the dark highlighter yellow). Another ER trip and found bilirubin of 8 and an elevated Ca19-9.
    We opted not to do an ERCP since he was eligible for surgery so did not know the definitive diagnosis until three days after his June 4th surgery when the biopsy results came back.
    We honestly look back and see the “gall bladder attacks” back at least six years so I suspect it has been there at least that long. As his PCP went back through the labs that he had drawn every 3 months and we see a gradual trend of his liver functions elevating but nothing worrisome. The last set were drawn three weeks before he turned yellow and they were barely abnormal.
    This is sneaky stuff.


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