PSC Cholangiocarcinoma

My husband went to hospital with a high ALP slightly jaundiced Bilirubin 180, two and a half weeks later after every scan ERCP they put a plastic stent in then took it out following a second ERCP as Bilirubin rose to 500 after first procedure.

1 Liver Biopsy not sure if they found anything no chirrosis definitely.  Said they may do another ERCP to stent but didn't just gave another Liver biopsy again no results.

He was given two lots of antibiotics which they think caused DILI drug induced liver injury.  Too many scans in two weeks with contrast dye.

Over 12 biopsies taken mentioned possible cancer not sure.  Shadow on liver not sure again.  

Then sent home for palliative care with no treatment because his bilirubin is to high for any treatment whatsoever?

We asked for a second opinion one hospital refused the other one just said we can't do anything the first hospital hasn't done.

I feel they have not done anything helpful on his admittance or treated him sooner to resolve his bilirubin.  His Cancer has not been staged there were even question marks on Cancer.

Now he dying in front of me as his Liver is failing, within 3 months.  Has anybody ever experienced this?

I have lots of contradictory letters from all their MDT meetings a lot seemed like guess work, and there are mistakes that other staff have picked up.

No option for liver transplant?  Although he has no spread of disease, no chance of bypass?  His Bilirubin is around 500.

I just don't understand I have asked for answers but now it's Cholangiocarcinoma and Obstructive Jaundice although this isn't clear in their paperwork.

  • Hello MrsJu, 

    I am so sorry to hear about everything your poor husband has been going through and all the uncertainty you have had to put up with recently. You've had to deal with so many frustrations as for example being refused a second opinion or being told that there was nothing that they could do for you that the other hospital hadn't done as well as being left with the feeling that not enough was done on his admittance to resolve the rise in bilirubin. And it must be difficult for you not to have all the facts, for example for his cancer not to have been staged. It must be heart-breaking for you and you are probably feeling powerless and having to face a certain dissatisfaction with the way things were handled. It must be so hard not to be given options and to feel that you are not getting all the answers you need and deserve. The lack of clarity must be difficult to bear and it might be worth arranging to meet his medical team if you can and asking them to explain to you anything that you feel needs clarification. 

    If you strongly feel that not enough has been done or that mistakes were made that you feel you ought to flag, our website has useful information on how to complain about healthcare services. 

    I hope this helps a little and if you wanted to have a chat with one of our lovely cancer nurses, there is a free helpline you can ring on 0808 800 4040 - it is open Monday to Friday from 9am to 5pm. 

    We're thinking of you during this difficult time and wanted you to know that you are not alone here on our forum and I hope that I will be joined by other members of our community who have been through something similar before and that they will be along soon to share their story with you

    Best wishes, 

    Lucie, Cancer Chat Moderator