Hilar Cholangiocarcinoma
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- This topic has 20 replies, 12 voices, and was last updated 9 years, 6 months ago by iowagirl.
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April 23, 2014 at 1:22 am #81717shellinaMember
My husband has intrahepatic cholangiocarcinoma. He has a stent with an external biliary drain bag. They did brushing 2 or 3 times and never got a positive biopsy. We had a hard time understanding this. The oncologist told us this was common. They told us they could make a positive diagnosis without continuing doing brushings. It has been over a year. He does in fact have ICC. The diagnosis is made based on other tests and symptoms.
April 22, 2014 at 8:01 pm #81716lainySpectatorHi Ruali, I am not up on the brushings. At the top of the page we have a search site and if you click on that and enter anything you are looking for, usually posts pop up on that subject.
April 22, 2014 at 7:58 pm #81715claremSpectatorHi Ruali,
Welcome to the site although I am sorry that your mum has been diagnosed and you have had to come here. My understanding is that diagnosis can be challenging and that brushings can indeed come back negative when someone does indeed have CC. The stomach pain might be unrelated to the stent placement and there could be another cause for it which I would ask the docs about.
April 22, 2014 at 7:21 pm #81714rualiMemberThank you Lainy for your warm welcome and your suggestion. This site has given me so much relieve knowing that we are all in this together fighting for this dreadful illness. I will try to give regular updates on the progress of my mothers treatment.
I want to know if this bilary brushing is accurate or not? I have research the internet and the number of false negative is around 45%. I will talk to our doctor to see if they can take biopsy to secure the findings.
April 22, 2014 at 7:08 pm #81713lainySpectatorDear Ruali, welcome to the best place to be for CC and I am sorry to hear about your Mother. We are big believers in 2nd opinions and we do not believe in time frames. Normally stents are not painful after insertion and it is a possibility that the stent is not in place. I would definitely get another opinion and I would ask her ONC what the chemo is going to do for her if he feels she may have less than a year. It is that old question of quality of life over quantity of life. Please try to get that 2nd opinion and let us know what happens as we truly care!
April 22, 2014 at 6:59 pm #9858rualiMemberHi All, I am thankful to have found this site. My mother (50 years old) has been diagnosed with Hilar Cholagiocarcinoma last month and the doctor informed me that she has only 6 to 12 months to live (which i don’t want to believe). Metal stents have been implanted in her bile duct to ease the jaundice. And now she is gaining her weight back, in 3 weeks she gained back 2 kgs. Her only complain after the stents is that she is having a mild stomach ache and she is taking pain killer which kills the pain for almost 2 days. Is this normal while having stents in place? And also, the bilary brushing that her doctor performed during endoscopy shows negative. Now that her billirubin level comes down to 2, (it was 9 before the stents) we are advice by the doctor to take chemotherapy. How accurate is this brushing, can we take biopsy for this type of cancer?
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