Bile Duct cancer that has spread

My wife has just been diagnosed with cholangiocarcinoma which has spread to the portal vein, lungs, spleen and liver. There is no treatment such as surgery or chemo that will help her. She is fairly young at 53 and is fit and healthy. She only felt unwell this last month but we put it down to the menopause and work. The news is devastating to us, we are newish couple been together for 5 years and married for 3. We had so many plans for the future all now lost. She is coping well, mainly tired and uncomfortable abdomen with swollen liver. We have been told she has weeks to months to live but feel very confused by this as she's fine now. So my question I guess is how will this progress, what symptoms will she have and when will we know she's near the end? She's taking painkillers which work and drinking lots of water to keep calcium levels down. She feels thirsty alot, very dry mouth. They said she's managing on her reserves now eg up till this week walking 5 miles a day and working full time but what happens when they run out? I don't want to be morbid but would like to know the reality so we can plan for the short term.    

M

  • Hello Millie MM

    Thank you for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line. Welcome to the online community.

    I was so very sorry to read the news that your wife has been diagnosed with an advanced bile duct cancer for which there is no treatment. I can only imagine the impact this has had for you both.

    The speed at which she has become unwell and the fact that your wife seems well despite the prognosis, will have left you both shocked and confused.  

    You are clearly wishing to support your wife and have asked some very important questions. I will do my best to provide information, and sources of support for you both.

    I have also added links to services that Macmillan provides which you might also want to explore.

    This information can’t help but be difficult and emotional to read. You may not feel you can’t talk about things at the moment, but if you do think you would benefit from a chat with us on the support line, we would welcome your call and might be able to talk through the information to better help you understand.

    You might find our booklet Coping with Advanced Cancer helpful and I have added a link to the podcast, The Thing about Advanced Cancer, created by the Australian Cancer Council. Its sometimes less tiring to listen, than to read.

    When someone has a cancer that cannot be treated, the community healthcare services take the primary responsibility for care, rather than the hospital.

    This means the GP but also, importantly, the community supportive or palliative care team. Palliative care nurses specialise in managing pain and other symptoms and are skilled at anticipating changes and ensuring the patient and family understands what changes to expect and who will help. They usually visit people in their own homes and remain in regular contact to see how someone is and make sure any symptoms are being managed.

    They may be based in a hospice and work closely with other healthcare professionals to provide support and their services are free. Teams might include, or work closely with: a social worker; an occupational therapist; a physiotherapist; a counsellor; a spiritual care coordinator or chaplain and other professionals such as the Marie Curie nurses.

    Some people are referred to the community team early on in their illness, for example if they have troublesome symptoms. The palliative care team may be involved in the person’s care for some months.

    The same specialist palliative care team provide support when someone is reaching the end of their life, so that continuity of care continues throughout. They can support someone make an advance care plan and help to coordinate their care.

    Your wife’s GP can refer her to the palliative care team; it might make sense for this to be done now despite her being well as they will be so much better placed to help with those very important questions you have asked around what changes to expect, as they will be in a position to meet her and to make their assessments. However, you may find the booklet A Guide for the End of Life an important resource.  

    You mentioned that your wife is feeling tired and has some pain which is well-controlled by painkillers.

    You also mentioned that she has a dry mouth. Could I suggest she tries sucking ice cubes or lollies. You can make lollies by freezing fresh juice in ice cube trays or in lolly containers with sticks. Chewing sugar-free gum can sometimes help to produce more saliva and using a lip balm will protect her lips.

    You wrote that your wife continues to work full-time. It might be that she wants to remain in work for the moment, but it could be helpful to have our information on work and cancer, should either of you be thinking about changing your work pattern.

    It might help to know that we have a welfare rights team who can help with any benefits you may be entitled to as a couple, and a financial guidance team should you need specialist advice regarding bigger money concerns, such as loans or your mortgage.

    I hope you find this information helpful. Please don’t hesitate to get back in touch if there is anything else we can support you with.

    with my best wishes, Helen

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

     

    Ref/CF