Coping with advanced 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.

Unfortunately, advanced bile duct cancer is unlikely to be cured. But your doctor might suggest you have treatment to try to slow its growth and relieve symptoms.

How you might feel

You are likely to feel a range of powerful emotions if you are diagnosed with advanced bile duct cancer. You might feel confused and find it difficult to take in what people say. You might feel angry, fearful, or sad, which can make you feel exhausted. There can be a lot of uncertainty that is very difficult to deal with and you may find it impossible to think about anything else.

You may also find yourself wondering why you have cancer and wonder if you could have prevented it. Many people blame themselves. But we don't know why most people with bile duct cancer get it.

Some people find it helpful to find out more about the cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

what your diagnosis means
what is likely to happen
what treatment is available
how treatment can help you
what the side effects of the treatment are

Talking about advanced bile duct cancer

You might want to talk about the cancer but find it hard to do. You may need to put your own thoughts in order before talking to anyone else. Or you may want to talk straight away to help you work out how you are feeling.

Everyone copes with a cancer diagnosis differently. There is no right or wrong way. You should do whatever you feel is right for you.

You are likely to have lots of questions. Some of them might be difficult to ask. It can help to write them down and speak to your doctor or specialist nurse about them. Or you can contact our information nurses and talk about your questions and worries with them.

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.

Specialist nurses

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.

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 number.

Family and friends

Your family and friends might be able to support you and talk to you about the cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.

Some family members want to ask difficult questions and others don’t. It can help to give each other the space to ask any questions. This may mean giving your doctor permission to talk with your family without you there. Or, if you are a relative, you could give the person with cancer time to talk to their doctor alone.

If you find it easier to talk to someone other than your family and friends, you may prefer to speak to a counsellor.

Spiritual support

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

Cancer Chat

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.

Physical effects

Advanced bile duct cancer is likely to cause changes inside your body that affect how you feel physically. These can depend on where the cancer has spread to (secondary cancer). They might include:

itching
feeling very tired (fatigue) and lacking energy a lot of the time
weight loss
pain
feeling short of breath or having trouble breathing

Coping with everyday life

It is important that you feel as well as you possibly can. If you have any symptoms, tell your doctor or nurse so they can help you get the treatment you need to relieve them.

Symptom control nurses

Symptom control nurses are specialist nurses who work with you and your doctor to help control any cancer symptoms. They can also help to improve your physical and emotional well being. They are sometimes called palliative care nurses or home care nurses.

If you don’t already have a symptom control nurse ask your doctor, GP, or specialist nurse at the hospital to refer you. Some symptom control nurses will take direct referrals from patients or relatives.

Many symptom control nurses have counselling training. This means they can help you and your carers work through some of your emotions.

Coping financially

Many people with advanced bile duct cancer worry about money. Your specialist nurse or GP should be able to help you apply for grants for heating costs and other household expenses related to your illness. They can also help you to claim benefits for yourself or the person caring for you.

It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Support at home for you and your family

You can get emotional and practical support through your hospital, local hospice and GP surgery. You can also get help from charities and support groups.

GP

Your GP manages your healthcare when you are at home. They 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.

Community and district nurses

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.

Community specialist palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

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.

Local support services

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.

Where to get more information

There are organisations that offer information and support to help you cope with bile duct cancer and its treatment. There are also organisations that offer general cancer support and information.

Questions you might find it difficult to ask

Why is the outlook of my cancer poor?

Having surgery to remove bile duct cancer is the best chance of curing it. Unfortunately, most people are diagnosed after the cancer has spread to other parts of the body. This means it is not normally possible to remove the cancer. But doctors are getting better at helping people live longer after their diagnosis.

Why can't I have a liver transplant?

A liver transplant is not usually an option for bile duct cancer. This is because it is highly likely that some cancer cells will have broken away from the tumour and spread elsewhere in the body. Cancer cells that have spread elsewhere will continue to grow whether you have a transplant or not. So, the operation wouldn't get rid of all the cancer.

Researchers around the world are looking into liver transplants for some people with intrahepatic and perihilar bile duct cancer. But this is mainly for people whose cancer has not spread elsewhere in their body.

Will I have pain?

Pain is a common symptom of bile duct cancer. But pain can usually be well controlled with the right type and dose of painkillers. You should not be in pain when you are resting. It can be more difficult to get rid of the pain completely when you are moving around. But this can often be done.

How long will I live?

Your doctor or specialist nurse is in the best position to give you an idea but even then they can’t be sure. For this reason, some doctors try to avoid giving you an estimate of how long you may live (your prognosis).

If it's very important that you know, explain that to your doctors. You can say that you don’t expect them to be completely accurate, but you would like to have some idea so you can plan the time you have left.

The longer your doctors are treating you, the easier it becomes for them to estimate a likely prognosis. Over time, the doctors and nurses you see regularly will form a picture of how things are going for you. They should then be able to give you some idea of how long you are likely to live.

How will I die?

When a cancer is very advanced, the levels of chemicals in the body become very unbalanced. Often this can make you gradually slip into unconsciousness. This is usually right at the end of your illness. It may happen only a few hours or days before you die.

It should be possible to control most symptoms with treatment from your doctor and support nurses. Talk to them about any worries you have.

Making plans

Thinking about your priorities and planning what you want to do may help you to feel more in control. You might want to talk about how you want to spend your time, and what is and isn’t important to you.

Some of your future plans may no longer be realistic, but you do not have to abandon them all. You may be able to adapt some. And you may get round to doing something you have always wanted to do but were not able to make time for.

You can talk to your doctor about managing your treatment around your plans. Or you may be able to have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life. And you might need to make some decisions, such as where you want to be looked after and who you want to care for you.

But, not everyone is ready to read about what happens when someone is dying. Some of the information can be upsetting and difficult to cope with. You might want to skip this information and come back to it later. Or if you do want to read more, you may want to have someone close by to support you.