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My husband was diagnosed with cholangiocarcinoma on 30th December.

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jane243
jane243

'Probable cholangiocarcinoma' is what the discharge notes from hospital actually said. He had had sky high liver function tests a month earlier and an MRI scan had shown some 'sludge' in the bile duct. An ERCP was performed which unfortunately did not unblock the duct and a bypass stent was inserted by the consultant. [I'm not sure if it was a radiologist or a gastroenterologist who did this procedure, rather think it may have been the latter]. Anyway the temporary stent was replaced a few days later by a permanent metal one. We were told that they had not collected any tissue to do a  biopsy as it was hard to access without disturbing the blockage, hence the 'probable' diagnosis. He is 84 and was told the only treatment is palliative care and that the stent would become blocked in a few months and would probably need replacing.  A CT scan showed no spread of the cancer. 

Prior to a routine follow up appt in mid April with the consultant  he had a full blood count and liver function tests done which were fine [haemoglobin was a bit low] but the bilirubin was now in single  figures [6] and the ALT was now 78 where it had been 305 at the end of December.  The GP was pleased with these results as was the gastrochap when we saw him later that week. He didn't examine him, just asked questions. As we left he said he wasn't going to do any scans [I imagine until they were needed] and to just 'go off and enjoy life'and he hasn't got another appt.  So we did and have just returned from 10 days with our daughter in France where he enjoyed the wine and sunshine! It's hard to believe there is actually anything wrong with him he looks so well although he does tire easily but then he is 84 and has been becoming slower for some years now.

i am probably tempting fate by asking if it is possible that this diagnosis is wrong?  They did not do a biopsy as I said and he was told the stent would block up in 3 or 4 months.  It is now almost 5 1/2 months and he is seemingly well, eating as normal too. 

0 likes, 4 replies

4 Replies

  • leeniepie
    leeniepie jane243

    Posted

    It is possible, seeing as no biopsy was done and you haven't seen an oncologist. The Stent not blocking doesn't mean anything - even if it is a tumour they all grow at different rates.

    Since the treatment would only be palliative anyway, and considering your husbands age, I'd do my best to just get on with life until symptom cause problems if it were me.

    • jane243
      jane243 leeniepie

      Posted

      Thanks for your reply. Getting on with life is what we've been doing but in early January I was told to expect 'months not weeks' and the info on this site [and others] indicated that  it would not be a long drawn out affair.  I was told by a GP- not my GP - that it could be up to  a year. Also if you are older I was told  that cancer often progresses more slowly than if you're younger. [I don't know if it's relevant but the blockage was extra hepatic.]  He hasn't seen an oncologist or  anyone other than the gastroenterologist. After the ERCP didn't work as hoped we were given names and numbers of nurses, hospices, McMillan and MarieCurie contacts. At  the time I glanced at it all then put it away until needed.  All very depressing!
    • leeniepie
      leeniepie jane243

      Posted

      i would go back to the gp. you need some answers
    • jane243
      jane243 leeniepie

      Posted

      The GP is a friend of my daughter although I always see her on a professional basis at the surgery.  If I were seeing her for anything else I would ask but feel she would think me rather fanciful if I were to make a special appointment to see her. Perhaps I am but there are some questions I would like answered.

      Thank you for your reply.

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