Tumour in my bile duct

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Hi all

I'm new here, and I'm waiting waiting waiting it seems to be told whether or not the tumour in my bile duct is benign or not.  

I became ill suddenly in April and after many years they discovered I had large stones in my gallbladder and my bile duct was blocked.  They did an ERCP to insert a stent but they didn't have the facilities to do a biopsy only a "brushing" sample.  I unfortunately succumbed to necrotising pancreatitis and spent the next 3 and half weeks in hospital on IV antibiotics and morphine... 

I then had to wait for an appointment at another hospital to get a biopsy done but ended up in hospital again with another infection.  Eventually got out and got the Spyglass endoscopy along with a replacement stent done but the 2 week diagnosis window has gone, now they won't tell me until after they've had my next CT scan and head an MDT meeting.... Has anyone else had long waits like this? 

During this time I've also lost over 5 stone (70 pounds, 32kg) without trying... Is this usual?

Thanks for reading.

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    Waiting for the results of a biopsy can be a very stressful time but hopefully you don't have too much longer to wait.

    I'm not a member of this group, so I don't know if your weight loss is unusual or not, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier for others to see.

    I'll keep my fingers crossed for a benign result x

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  • Hi GrandmaJ and sorry to hear your story. I also apologise for possibly being a little late with this response but I have only just joined the Bile Duct Forum myself and I note that your original entry was about 6 months ago? So if its not too late I can tell you that I too recently felt unwell, had a loss of appetite and lost weight and subsequent hospital tests plus an endoscopy showed that I had jaundice. This was caused by gall stones blocking my bile duct and after the stones were removed a stent was fitted into the bile duct and I then felt very well - this was in early March 2024 after 11 days in hospital - I am 79 by the way. After being called to a meeting in hospital a several weeks later I was told that biopsy samples taken during the endoscopy showed a tumour at the bottom of my bile duct and subsequent tests and scans have shown this to be cancer of the ampulla of vater (strange name isn't it) and this is a very rare cancer which only affects 1 man in every 200,000. As yet, I have not had any treatment and ironically I actually feel very well and am eating well but have not yet put any weight back on. So, if it helps, I can confirm that weight loss also happened to me as did a wait of several weeks before getting the results of biopsy samples. I wish you well and send my kind regards, NogBad.    

  • Hi there! 

    Thank you for your reply!  I lost a total of 6 stone 4lbs or 40kg in the end and my surgeon who removed my infected gallbladder identified it as the cholangiocarcinoma tumour causing it.  I have sat long last been referred to oncology and although my cancer is incurable I've been getting chemo and immunotherapy.  That's paused for the moment though as I ended up with cloud clots on the lungs, side effect from chemo, and then also a liver abscess, which is now being treated with a very long course of IV antibiotics.  Hoping to be back in track with chemo in June. 

    Hope you are getting some effective treatment too Slight smile

  • I recently underwent major surgery for my bile duct cancer. 14 hours! This involved losing 40% of my liver, my bile duct and gall bladder. The surgeon said it was successful. I am in recovery and awaiting histology reports. I pushed hard for surgery as this is the only hope of a 'cure'. The recovery is slow and painful, but I hope it will extend my life, but we all know how sneaky cancer is. My cancer was found by chance and early, so here's hoping. The NHS treatment was done speedily and involved moving from one hospital to a specialist unit at another perhaps I was just lucky. During 5 months before surgery I underwent the same procedures as you, including 2 stents, which were unsuccessful and spyglass. I was first diagnosed with suspected  cholangiocarcinoma in mid November and had surgery end of April. I was in and out of hospital during this time, even spending Christmas Day in hospital. Their diagnosis was very vague, perhaps they weren't sure. I hope you get your diagnosis soon and it turns out to be begign. Since returning home I've lost my appetite  and taste and weigh 2st less than normal. I'm 69.

    Wayzgoose

  • Sorry, I'm new here too, I read your first post without scrolling down! I hope your treatment goes well.

  • Hi Wayzgoose 

    Thanks for replying. 

    Unfortunately after 2 admissions to hospital with infections in my gallbladder it was decided to remove it, it was extremely infected...  But he took biopsies at the same time and they confirmed it was in fact cholangiocarcinoma, bile duct cancer but it is inoperable.  I've been in v chemo for a short time but developed blood clots in my lungs then a n abcess in my liver so I'm been in and off IV antibiotics since the beginning of April.  Hoping to restart chemo in July. 

    All the best with your journey too