Living with bile duct cancer
Advanced bile duct cancer is cancer that has spread outside the bile ducts. It can also mean bile duct cancer that has come back some time after you were first treated. It is also called metastatic or secondary bile duct cancer.
If you have advanced bile duct cancer it’s normal not to be able to think about anything else. But everybody reacts differently. Many people find that knowing more about the situation can make it easier to cope with.
Read about coping with advanced bile duct cancer
You might have a number of different feelings when you're told you have cancer.
You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:
numb
frightened and uncertain
confused
angry and resentful
guilty
sad
You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.
Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.
Read about the feelings you might have after a diagnosis of cancer
You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.
Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.
Ask your doctors and specialist nurses to explain things again if you need them to.
You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.
Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.
You can also do practical things such as:
making lists to help you
having a calendar with all appointments
having goals
planning enjoyable things around weeks that might be emotionally difficult for you
You might find it helpful to talk to other people about how you are feeling.
Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information and signpost you to support in your local area.
Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their phone number.
Talking to your friends and relatives about the cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.
It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.
Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.
You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.
Or you may prefer to see a counsellor.
Find out about counselling and cancer
Some people find great comfort in religion. You might find it helpful to talk to:
a local minister
a hospital chaplain
a religious leader of your faith
Chat to other people affected by cancer in our online forum. Our friendly team of moderators and nurses are also on hand to support you.
Bile duct cancer and its treatment may cause physical changes in your body.
Some changes may be as a result of treatment. This can include scars after surgery, or hair loss after chemotherapy. These may affect the way you feel about yourself. They can affect your self esteem and how you relate to family, friends and other people.
You may feel very tired and lacking in energy a lot of the time. This is called fatigue. Tiredness may be worse during and after treatment, or if the cancer is advanced.
Read about ways to manage fatigue
Many people who have bile duct cancer lose their appetite and some may lose weight. Speak to your specialist nurse or dietitian about any eating problems.
Read about coping with diet problems when you have bile duct cancer
Many people with bile duct cancer develop . This can make you itch. Your doctor or specialist nurse may suggest some creams and medicines to help with this.
Read more about coping with itching
Your doctor or specialist nurse will help you manage any changes. They can also refer you to other health professionals who can help. This may include:
the
The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.
Read about cancer, relationships and sex
You and your family might need to cope with practical things including:
money matters
financial support, such as benefits, sick pay, prescription costs and grants
work issues
early retirement
childcare
Blue Badge applications
help with travel costs
changes to your house
Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.
Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospitals have a social worker available for people with cancer.
Read more about the practical support that is available to you
There are a number of people and services that can help if you have bile duct cancer. There is also support available for your family and friends.
Find out more about support for family, friends and carers
Your GP manages your healthcare when you are at home. Your specialist doctor will update your GP about your cancer care. Your GP can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.
These nurses work in different places in your local area and may visit you in your home. They can:
give medicines or injections
check temperature, blood pressure and breathing
clean and dress wounds
monitor or set up drips
give emotional support
teach basic caring skills to family members where needed
get special equipment such as hospital beds, special mattresses, commodes or bed pans
Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.
Social workers can help to support you with your situation at home. They can arrange:
home helps to help with shopping or housework
home care assistants for washing and dressing
meals on wheels
respite care
Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.
Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.
There is usually other help available but services can vary from place to place.
Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.
Good neighbour schemes offer befriending or practical help with shopping or transport.
Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.
You may find it helpful to go to a charity or support group to talk to other people affected by cancer.
Last reviewed: 01 Aug 2024
Next review due: 01 Aug 2027
There is support to help you cope with advanced bile duct cancer. And the symptom control team can help you feel as well as possible.
Your healthcare team can give you medicines to help control some of the symptoms of bile duct cancer. There are also practical things you can try.
Bile duct cancer and surgery to remove it, can cause diet problems. There are things you can do to cope and you normally have a dietitian to support you.
Cancer affects family and friends too. Get tips on how to support someone with cancer and how to take care of yourself.
There are organisations that offer information and support to help you cope with bile duct cancer and its treatment.
Bile duct cancer is also called cholangiocarcinoma. It is a rare type of cancer that develops in the small tubes that connect the liver and gallbladder to the small bowel.
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