Living with advanced bile duct cancer
This page has information about the emotional and practical issues of living with advanced bile duct cancer (cholangiocarcinoma). You can find the following information
Advanced cancer means that your cancer cannot be cured. This can be a great shock. You are likely to feel a range of very powerful emotions. There is no set way of handling this.
Your doctor may suggest you have treatments to try to slow the growth of your cancer and relieve symptoms. You will need to get information from your own specialist to understand what the diagnosis means for you. Your specialist can also tell you what treatment is available, and how the treatment may help you.
It is important that you feel as well as you possibly can. Ask your specialist, GP or hospital nurse about referral to a symptom control nurse (sometimes called palliative care nurses or home care nurses). These are specialist nurses who can work with you and your doctor to help control your cancer symptoms and improve your physical well being.
Support is available at the hospital and from support groups. Getting support can help you to cope. Your hospital or cancer support groups can offer emotional support or practical help, such as dealing with money matters.
You can view and print the quick guides for all the pages in the living with bile duct cancer section.
Advanced cancer means that your cancer cannot be cured. But your doctor may suggest you have treatments to try to slow its growth and relieve symptoms.
You will need to talk very carefully to your own specialist to understand
- What the diagnosis means for you
- What treatment is available
- How treatment may help you
You may feel very uncertain and anxious about the future. You may find it impossible to think about anything other than having cancer. You will need to work out your priorities. It is important to 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 do not have to abandon all your plans and you may be able to adapt some. And you might get round to doing something you have always wanted to do but have not been able to make time for.
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 very powerful emotions. You may feel confused and find it difficult to take in anything that people say to you. Anger, fear, and sadness can make you feel exhausted. You may think that you should talk all this through with your partner, other family members or close friends. But this can be hard to do.
There is no set way of handling this. 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. You should do whatever you feel is right for you.
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. This uncertainty can be very difficult to deal with.
You may feel that you need to find a reason for having cancer. But that may not be possible . There is information about why we don't all get cancer in our causes and cancer section. We also have a page about the possible causes of bile duct cancer .
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.
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. 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.
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.
Some symptom control nurses take referrals from patients or relatives. Contact one of the cancer information organisations to find out where your nearest symptom control team is based. Then you can phone them and find out how to arrange a visit.
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 may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients. There is information about Government benefits and charity grants in our living with cancer section. There is also information about mortgages, pensions, loans and insurance, including travel insurance.
If you know what to expect you may find yourself less anxious and worried. Talk to your doctor or nurse about your illness and treatment. It is important to know all your options. There is information about deciding about treatment in the treating bile duct cancer section.
If you would like to talk to someone outside your own friends and family, look at the general cancer organisations page . 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.
A diagnosis of advanced cancer is likely to mean you have all sorts of questions that you may find difficult to ask. The questions may also be difficult to answer. We have tried to answer some of those questions here. But there may be many more questions you can think of. It can help to write your questions down and talk 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.
Below, you will find some answers to the questions
- Why is the outlook of my cancer poor?
- How will I die and will I have pain?
- Why can't I have a transplant?
- How long will I live?
Unfortunately, few people are diagnosed with bile duct cancer early enough for it to be curable. And nearly everyone who has advanced bile duct cancer will eventually die of it. But specialists are getting better at helping patients to live for longer and longer after their diagnosis.
Bile duct cancer is difficult to treat partly because it is often diagnosed after it has spread to body structures and organs nearby, including the liver. Surgery is the only way to cure bile duct cancer. But surgery is not always possible because we can’t live without some of the surrounding organs and structures.
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 cancer often spreads to the liver. 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 then is that you 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 you have with treatment from your doctor and support nurses. Talk to them about any worries you have. There is information about what happens in the last few days of life in the dying with cancer section.
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. At the very least, you should not be in pain when you are resting. Pain when you are moving around is more difficult to get rid of altogether, but this can often be done. There is information about types of painkillers and other ways of controlling pain in our coping physically section.
Liver transplant is not usually an option in bile duct cancer treatment. Researchers are looking into it as a possible option for some people with perihilar bile duct cancer but it is 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 suppress their immune systems and stop them rejecting the transplanted organ. Suppressing your immune system is not a good idea if you have a cancer, because your immune system may be helping you fight it.
It is very difficult to answer this question. 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. Not everyone wants to know but many people do. If it is 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.
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