Living with advanced gallbladder cancer
This page is about having advanced gallbladder cancer, coping with it and talking about it.
Living with advanced gallbladder cancer
Finding out that you have been diagnosed with an advanced cancer, or that your cancer has come back, can be devastating. Advanced cancer means your cancer cannot be cured, although you may be offered treatment to try to slow your cancer down. You will need to talk very carefully to your own specialist to understand what the diagnosis means for you, what treatment is available, and how 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 Macmillan 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.
Help with other issues
Support is available at the hospital and from support groups. Getting the support you need will help you cope. This may be emotional support or more practical help, such as dealing with money matters.
You can view and print the quick guides for all the pages in the living with gallbladder cancer section.
Finding out that you have been diagnosed with an advanced cancer, or that your cancer has come back, can be devastating.
At first, you are likely to have a whirl of powerful emotions. You may feel confused and find it difficult to take in anything that is being said to you. Anger, fear, and sadness may come one on top of the other, leaving you exhausted. You may think you should be talking 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 all 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 may find yourself wondering why you have the cancer. Is it something you have done, or not done? Asking "why me?" and wondering if you could have prevented your cancer is very common amongst people with cancer. Many people blame themselves. But we don't know why some people get particular cancers and others do not. It just happens. This can be very difficult to deal with.
You may feel you need a reason for having the cancer. But it may not be possible to find a reason why. It is not down to anything you have or have not done in your life. There is more information about this in the section on why don't we all get cancer? in the causes and cancer section. We also have information about the possible causes of gallbladder cancer in our risks and causes section.
It means your cancer cannot be cured, although you may be offered treatment to try to slow the cancer down. You will need to talk to your own specialist to understand
- What the diagnosis means
- What treatment is available
- How treatment may help you
There is more information on treating advanced gallbladder cancer in the treating gallbladder cancer section.
You are almost certainly going to feel very unsure and anxious about the future. You may find it impossible to think about anything other than having cancer. Some people say a diagnosis of advanced cancer helps them appreciate ordinary everyday things much more than they did. You will need to work out your priorities. Think about how you want to spend your time – 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 give up all your plans. You may be able to adapt some. And perhaps do something you have always wanted to do, but were not able to make time for.
It is important that you feel as well as you possibly can. Ask your specialist, GP or hospital nurse if you can see a symptom control nurse (sometimes called Macmillan or home care nurses). These are specialist nurses who can work with you and your doctor to help control any cancer symptoms and improve your physical and emotional well being. Many of these 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 Macmillan 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 give them a ring and find out how to arrange a visit. You can also contact our cancer information nurses for more help.
Your symptom control nurse or GP should be able to help you get grants for
- Equipment to help you move around (such as wheelchairs)
- Heating costs
- 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.
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 more about deciding about treatment in the section about treating gallbladder cancer.
If you would like to talk to someone outside your own friends and family, contact one of the gallbladder cancer organisations or one of the counselling organisations. Some of the organisations give information about cancer and treatment, as well as cancer support groups. In a support group you can talk to other people who have cancer and may have experiences similar to your own.
A diagnosis of advanced cancer means you will have all sorts of questions that are not only difficult to answer - they are difficult to ask. We have tried to answer some of those questions here. But there are more questions you can think of than we would ever be able to answer. Write your questions down and talk to your doctor or nurse. Or contact a telephone cancer information service and talk your questions and worries through with them.
It is very common for some family members to want to ask difficult questions and some not. It can help to give each other the space to ask as much as you want to. This may mean giving your doctor permission to talk to your next of kin on their own. Or, if you are a relative, giving the patient time to talk to doctors by themselves.
Difficult questions you might want to ask include
Very sadly, few people are diagnosed with gallbladder cancer early enough for it to be curable. Unfortunately nearly everyone diagnosed with advanced gallbladder cancer will eventually die of it.
Gallbladder cancer is very serious partly because it is often diagnosed after it has spread. And partly because it often grows quite quickly. When a cancer has spread to other parts of the body it is much more difficult to treat successfully. You can’t simply remove them with surgery. Gallbladder cancers don’t respond well enough to chemotherapy or radiotherapy for them to be cured by these treatments alone. But specialists are getting better at helping patients to live for longer and longer after their diagnosis. The more research we can carry out, the more likely we are to increase the success of treatment.
But how does the cancer affect you? The gallbladder is part of your digestive system. Any advanced cancer in the digestive system will make it more and more difficult for you to eat well and digest food properly. The cancer often spreads to the liver. This is the chemical factory of the body. Having cancer in your liver upsets the chemical balance of the body.
When the cancer is very advanced, the chemical balance of the body becomes completely upset. What normally happens then is that you slip into unconsciousness. This is usually right towards the end of your illness, maybe only a few hours or days before you die. Any symptoms you have before that should be possible to control or reduce, with treatment from your doctor and symptom control nurse. Talk to them about your fears. What you imagine may happen is often far worse than what actually will. There is information about what happens in the last few days of life in our dying with cancer section.
Organ transplant is very rarely an option in cancer treatment. This is because it is highly likely that some cancer cells will have broken away from the tumour and be elsewhere in your body. These will continue to grow whether you have a gallbladder transplant or not.
It is very difficult for any doctor to answer this question for you. They can only make a guess at the answer. For this reason, some doctors try to avoid giving you any estimate at all of how long you may live.
If you have advanced cancer you may not want to know. And this is your choice and not something that anyone else should decide for you. But some people do want to know how long they may live, so that they can make plans. They may want their close relatives and friends to know too.
If it is very important to you to have some idea of how long you have, explain this to your doctors. Explain that you do not expect them to be completely accurate, but you would like them to give you some idea so that you can plan the time you have left. The doctors and nurses you see regularly will form a picture of how things are going for you. Over time, they should be able to give you some idea of how long you have left.
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