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Terminal bile duct cancer

Hi,

looking for anyone who has experience or knowledge about this cancer, my husband who is 45 has just found out recently after becoming jaundice that he had bile duct cancer and advanced and spread to liver, we met oncologist last week and said it was probably stage 3 but he said it can't be removed because of where cancer is! So surgery isn't an option, he then said that it os terminal and prognosis with chemo might give  him 6-12 months!!! I can't get my head round it all!! He is fit and healthy, was never ill apart from jaundice!! Any help would be great i.e. Palliative chemo 

 

thanks amy 

  • No, they planned for dad to have chemo but he never actually got to that point! From diagnosis to him passing was 3 weeks! Unbelievable. 
    I'm so sorry you are going through it with your Dad, I fully understand your torment! How old is he? When was he diagnosed? 

  • O my god that's crazy .dad is 62. Started chemo last week but v v v sick. Wev no idea what the plan is or how he's goina get on. He's stopped eating and lost so much weight. 

  • Yes that's what happened to my dad too, he lost a lot of weight very quickly. I wish you lots of love and strength and hope your dad can fight this x 

  • It's so scary how fast it happens. My dad was perfect a month ago and now so so so sick. How does it get so bad so fast at all. So surreal. God ye really and no time at all. I'm so sorry to hear your sad news. It's such an awful cancer. 

  • Rosie I just had to message you. I feel like we hve literally gone through the same hellish nightmare. 
     

    6 weeks ago my dad who was 68, fit and healthy got jaundice. He had scans and was told there was a blockage and he was pretty certain it was something serious. He told me this on the Thursday, and that he had a day case procedure to put a stent it to check for signs in the bile duct. 
    He never came out. 
    He died on his birthday.. alone in the ward because of Covid.. and the hospital didn't keep in contact with us to let us know that he was seriously ill. He developed pancreatitis due to the stent being out in and he ended up with organ failure. 
     

    we are now chasing the hospital for results of the biopsy but they said they a pretty sure it was bile duct cancer. 
     

    just like your dad my dad was walking and playing golf twice a week the week before he got the jaundice. 
     

    I hadn't seen him since Christmas because of my honeymoon and lockdown. Other than one day a month before for my grandmothers funeral (his mother) who died from Covid. 
     

    im sos prey that you are going through this too. The pain is real and I'm scared it will never go away and I will never trust hospitals again. 
     

    woukd be nice to chat seen as we are in a sinikat boat sometime. 
     

    hope you are ok

    sending love to everyone on this forum .. stay strong. Xxx

  • Just realised your name isn't Rosie! Apologies! I'm new to this! 

  • Omg your story is so like mine. I'm so sorry for your loss!! I know what pain you are going through right now. An inquest has been opened into my dads death and we have also put in a sepearte complaint at the lack of care dad and us all recieved when he was in hospital, we were kept in the dark and had such little communication which was so cruel as we couldn't be with him. 
    The coroners report came back that my dad has organ failure too and internal bleeding due to the stent procedure being done. If you want to chat then please PM me xx

  • Yes we are currently doing the same! Put in a complaint and asked for his records. Also sent 3 pages of questions to the hospital for versions people to answer and we have asked for a zoom meeting with all of the relevant people. We want to know more as we feel let down by the hospital so much. 
    we found out the other day that the person who said they did the procedure didn't. All seems a bit odd! 

  • Hello

    My husband is 63 and been and is still undiagnosed. 

    All MDT team suspect malignancy but after lots of Ct scans. MRI scans. Endoscopy 12 Colonoscopy 2 

    They cant diagnose!!

    He got high grade dysplasia but still think its malignant around a main artery. 

    I am so anxious! This been going on for 12 months!

    I cannot describe anything more than hes lost 12 kg in weight. Gas and stomach and back pain!

    Just need to know!? Had another CT now yet another EUS!! 

     

     

     

  • Hi sorry for the response months later. No to be honest he didnt not until a few months in. He was  diagnosed 11th Jan 19 and passed 26th Dec 2019 id say from sept onwards is when he went down hill more or less weekly. From what I learned from here, no 2 stories are the same. For some its quick for others its a year or more if incredibly lucky. How has it been for you? Especially with covid I can't imagine not being able to see them when in hospital makes it so much worse when its already so so bad. Xx