Read about living with advanced bile duct cancer (cholangiocarcinoma) and what can help you to cope.
What advanced cancer means
Unfortunately advanced cancer usually means that your cancer can't be cured. But your doctor might suggest you have treatment to try to slow its growth and relieve symptoms.
Talk to your cancer specialist to understand:
- what the diagnosis means for you
- what treatment is available
- how treatment may help you
You might feel very uncertain and anxious about the future. You might find it impossible to think about anything other than having cancer. Working out your priorities may help. Think about how you want to spend your time.
You can consider what is important to you and what is not. Some of your future plans may no longer be realistic. But you might be able to adapt some. And you might be able to make time to do something you have always wanted to do.
It can be a great shock to find out that you have been diagnosed with an advanced cancer or that your cancer has come back.
At first, you are likely to feel a range of powerful emotions. You might feel confused and find it difficult to take in anything that people say to you. Anger, fear, and sadness can make you feel exhausted. There can be a lot of uncertainty that is very difficult to deal with.
You may find yourself wondering why you have the cancer. It is common for people to ask ‘Why me?’. You may also wonder if you could have prevented your cancer. Many people blame themselves. But we don't know why some people get particular cancers and others do not.
You might want to talk all this through with someone close to you. But this can be hard to do. You may need to try 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 dignosis differently. There is no right or wrong way. You should do whatever you feel is right for you.
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 are specialist nurses who can work with you and your doctor to help control any cancer symptoms. They can also help to improve your physical and emotional well being.
If you don’t already have a symptom control nurse (sometimes called palliative care nurses or home care nurses) ask your specialist, GP, or hospital nurse to refer you. Some symptom control nurses will take direct referrals from patients or relatives.
Many symptom control nurses have counselling training and can help you and your carers work through some of your emotions. If you have physical difficulties that make it hard to cope at home, your specialist nurse or a district nurse can talk to you about what may help you.
Many people with advanced cancer worry about money. Your specialist nurse or GP should be able to help you get grants for equipment (wheelchairs etc), heating costs, holidays and other household expenses related to your illness. They can also help you to claim benefits for yourself or for the person caring for you.
It might be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.
Where to get more information
Knowing what to expect can help you to feel less anxious and worried. Talk to your doctor or nurse about your illness and treatment. It's important to know all your options.
It might also help to talk to someone outside your own friends and family. There are counselling organisations and organisations that can give information about cancer and treatment. There are also cancer support groups where you can talk to other people who have cancer and may have had similar experiences.
Asking difficult questions
A diagnosis of advanced cancer is likely to mean you have all sorts of questions that you may find difficult to ask. We have tried to answer some of those questions here.
But you might have many more questions. It can help to write your questions down and speak to your doctor or nurse. Or you can contact our information nurses and talk your questions and worries through with them.
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 to your family members on their own. Or, if you are a relative, you could give the person with cancer time to talk to doctors by themselves.
Unfortunately few people are diagnosed with bile duct cancer early enough for it to be curable. But specialists are getting better at helping patients to live for longer after their diagnosis.
Surgery to remove the cancer gives the best chance of curing bile duct cancer. But many people are unable to have surgery. This is because bile duct cancer is often diagnosed after it has spread to nearby structures and organs, including the liver.
Bile duct cancer may affect you in a number of ways. The bile ducts are part of your digestive system. Any advanced cancer in the digestive system makes it more and more difficult for you to eat well and digest food properly.
The liver is the chemical factory of the body. Having cancer in your liver upsets the chemical balance of the body. If the bile ducts become blocked they may become inflamed and infected and this can be difficult to control.
When a cancer is very advanced, the chemical balance of the body becomes upset. What normally happens is that you gradually slip into unconsciousness. This is usually right at the end of your illness. It may happen only a few 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.
Pain is a symptom of cancer of the bile duct. 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 pain completely when you are moving around. But this can often be done.
Liver transplant is not usually an option for bile duct cancer. Researchers are looking into it for some people with perihilar bile duct cancer, but it's not possible for most people. 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. Transplant patients also have to take drugs to dampen down (suppress) their immune systems and stop them rejecting the transplanted organ.
Suppressing your immune system is not a good idea if you have cancer, because your immune system may be helping you fight it.
Your doctor or specialist nurse is in the best position to give you an idea but even they can’t be sure. For this reason, some doctors try to avoid giving you any estimate at all of how long you may live (your prognosis).
If it's very important to you to 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.