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Husband has just been confirmed to have terminal cancer - hilar cholangiocarcinoma. What do I do?

  • Hello Roo33333

    I am very sorry to hear of your husbands diagnosis of hilar cholangiocarcinoma. To hear that it is terminal must have been a dreadful shock for you both. There is no right or wrong way to feel at the moment and all I can suggest is to go with the flow, accept that it is normal to feel shocked, angry, sad and very up and down.

    It is normal to have a lot of questions about what happens next so I will pop some links below that may be of help. You may want to look now or save till later- it is entirely up to you. It may help to have some information about what may happen next before you both see the consultant again to discuss the next steps. Although a cancer may be incurable it does not mean that some kind of treatment can not be given to help with symptoms and to control the cancer.

    Bile duct cancer | Macmillan Cancer Support- This has a bit of information about bile duct cancer and some of the treatments that may be offered.

    The online community is divided into different forums depending on cancer types and experiences and there is one I feel maybe of some support and I will pop the link below. It may help to share with others in a similar situation.

    (+) Supporting someone with incurable cancer forum - Macmillan Online Community

    For any medical questions we have an Ask the Nurse section where you can post questions and they will normally get back to you within 3 working days.

    (+) Ask a Nurse - Macmillan Online Community

    And finally, if you just want to talk to someone then I can recommend the Support Line. The number is below and they are lovely on there.

    I hope this helps a bit, if there is anything else we can do to support please do ask. I hope that you do not have to wait too long to see the doctors to discuss what happens next for your husband. 



    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I am so sorry to hear this. I too have just had the same news regarding my dad however we still do t know whether there are treatment options Fingers crossed

  • Hi @Roo33333 - you've probably done all this already but my answer is: ask lots of questions, learn as much as you can, go with him to appointments, make sure he's linked with a Clinical Nurse Specialist who can keep you both informed. Keep breathing, and look after yourself as well as him. Everyone's journey with this is different. None of it is what you ever wanted to learn, but you will find your  way to navigate. Sending hugs.