Bile Duct Cancer & Sepsis

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Hi Everyone, 

I've just joined this group as a close family member has been diagnosed recently with Bile Duct Cancer. I have always been an avid supported of Macmillan and have recently completed their 5k 10 day challenge. 

The diagnosis initially was delayed as it was believed to be gallstones and cancer was ruled out. A ERCP procedure was carried out and it was believed that a stent had been fitted (bearing in mind this is all going on during COVID and so no one could go into the hospital other than the patient until the discharge). 

It then turned out a stent had not been fitted and there was a miscommunication regarding this. A week later they were back in for another ERCP which also failed but they also didn't come home on this occasion. It was at this point it was realised that there was a tumour in the bile duct. It was suggested that the tumour at was only stage one but further tests would be required to find out what type of tumour it was and to ensure it definitely hadn't spread anywhere else.  

A further procedure was completed and the stent was successfully fitted. They were then sent home to recover for 6 weeks until a consultation could be had with a specialist. Two weeks later they were rushed back to hospital after two days of temperature spikes and pain in the side. This is when we were told they now had bilary sepsis. They are still in hospital now being treated for this. 

I am finding it incredibly hard to get information, purely because we are in the midst of a pandemic, and we cannot go into the hospital ourselves to get the information we need, which I completely understand. I don't think the hospital are allowed to give information over the phone either and the patient is too ill to update us. I just wondered if anyone else had been through this and knew if this was all normal (not that anything seems to be normal now a days!) 

Any support or advice would be much appreciated. Thank you in advance. 

  • Hi There, so sorry to hear about your family member. I completely understand , these are particularly difficult times for treatment and caring for a loved one. 
    my Dad had bile duct cancer and everything you’ve described is pretty much normal from my experience. Dad went in with jaundice and sick stomach in June 2019. Once they discovered Dad had no pain they quickly ruled out gallstones. We experienced multiple ercps also as the stent wasn’t reducing the bilirubin in the blood as quickly as it should so it needed to be readjusted. While getting the 3rd ercp they also took a biopsy of the tumor. 

    I have no experience in relation to the sepsis I’m afraid. Generally the next phase is to find the exact position of the tumour. A specialist will then meet with your family member to see if surgery is a viable option and if they are physically fit enough to undergo the surgery. The surgery is know as a Whipple Surgery. My Dad underwent surgery in July 2019. 

    Any type of cancer diagnosis is pretty daunting so feel free to ask any questions at all. 

  • Thank you @lisa36 for replying, I wasn't really expecting a reply if I'm honest as I know everyone has their own issues going on if you are on here. I hope that your Dad's surgery was successful? 

    They did a biopsy on the tumour when they did the last ERCP 3 weeks ago but we have not had the results yet so we are chasing this at the moment. 

    It has been confirmed this morning that the sepsis is now under control which is a huge relief so hopefully we can now start to focus on the treatment for the cancer itself. I believe they will look into the Whipple surgery as it is only stage one cancer so they thought this may be an option. They also discussed chemotherapy and radiotherapy. 

    So I suppose my next questions are:

    With the Chemotherapy - I have read quite a few things about CIS chemotherapy which seems to be the most successful? Can anyone give me more information on this, I think it is a trial Chemo?

    I haven't seen many stories on here of people undergoing the Whipple surgery, is there anyone that has had it and found it successful? 

    With regards to the stents, I believe the plastic stents can attract more bacteria and so infections are more likely? Does this sound right and has anyone had their stent changed for a metal one to help prevent infections? 

    Thank you again to anyone that is reading and replying. It means an awful lot to know we are not alone in this. :-) 

  • You're definitely not alone. This forum is great for getting things written down and dealing with all of your thoughts . We were very lucky also that his cancer was caught early before it had spread from the bile duct. 

    Dad had the plastic stent temporarily put in and done really well with that for the 3 months it was in as he was due his surgery in Aug 2019.My Dads surgery was successful at the time. Surgeons felt they had cleared all the margins of the cancer cells. The surgery lasted about 8 hours and honestly he flew through the recovery. The doctors will then put you on Creon tablets to take for the rest of your life. These are simply enzymes that break the food down in your system and only are taken with meals. He underwent 6 months of precautionary chemo (gem cis mix) just in case any cells were floating around.

    He felt great for about 6 months but unfortunately developed pneumonia in both lungs from the chemo and then caught COVID in hospital so he had a pretty bad knock to the immune system. We were told that he was still cancer free June 2020 when he left the hospital but the cancer came back by September. He went for more chemo but it wasnt working anymore and we lost him last month sadly. I think if his body hadnt taken such a beating from the Covid/Pneumonia the cancer wouldnt have returned as quickly.

    Looking back I would still recommend the surgery if its available.  We got 21 months from diagnosis to him passing. Most people find out after its too late and have no options so we in a way felt blessed to have had that extra time with each other. 

    Im so relieved for you that the sepsis seems to be under control. One less thing for you all to worry about. Hopefully now the results will come back from the biopsy so that the wheels are in motion. Cancer is such a stressful thing to deal with but its on a whole other level with COVID. We are still on level 5 restrictions in Ireland and it was hard to go from his first bout of cancer where we could do everything for him to going through it during covid. 

    If there is anything you want to ask during the journey always feel free. Support really will be a huge thing for your family member and the fact that you are here and trying to get as much information as possible already shows that you'll be a great support to them x