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Living with advanced pancreatic cancer

Men and women discussing pancreatic cancer

This page has some information about the emotional and practical sides of coping with an advanced cancer. You can find the following information

 

A quick guide to what's on this page

Living with advanced pancreatic cancer

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 experience a whirl of powerful emotions.

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. These are specialist nurses who can work with you and your doctor to help control your cancer symptoms and improve your well being.

This page contains more information about living with advanced pancreatic cancer including

  • Coping financially
  • Finding information
  • Questions you may find difficult to ask

CR PDF Icon You can view and print the quick guides for all the pages in the living with pancreatic cancer section.

 

Your feelings

Finding out that you have advanced cancer when you are diagnosed, or that your cancer has come back can be devastating. You probably feel confused and find it difficult to take in anything that is being said to you.

At first, you are likely to experience a whirl of powerful emotions. 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 you may find this impossible 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 illness is very common amongst people with cancer. Many people blame themselves for no real reason. There is more about the possible causes of pancreatic cancer in the about pancreatic cancer section. Some cases may be linked to smoking. But lots of people smoke and do not get cancer of the pancreas. So again, why you? We do not know why some people get particular cancers and others who behave the same way (or worse) do not. It just happens. This can be very difficult to deal with. You may feel you have to know why you have cancer. But you may have to accept that there is no clear reason why.

 

What advanced cancer means

Advanced cancer means your cancer cannot be cured. Although you may be offered treatments 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
  • How treatment may help you

There is more information on treating advanced pancreatic cancer in the treating pancreatic cancer section.

You are almost certainly going to feel very uncertain 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 will no longer be realistic. But you do not have to abandon all your plans. You may be able to adapt some. And maybe get round to doing something you have always wanted to do, but were not able to make time for.

 

Coping with everyday life

It is important that you feel as well as you possibly can. Ask your doctor or nurse about a referral to a Macmillan or specialist nurse (sometimes called symptom control or home care nurses). A specialist nurse can work with you and your doctor to help control your cancer symptoms and improve your physical well being. Many have counselling training and can help you and your carers work through some of your emotions. If you are having any physical difficulties in coping at home your specialist nurse or a district nurse can talk to you about ways you may cope more easily.

 

Coping financially

Your specialist nurse or GP should be able to help you get grants for mobility aids (wheelchair 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 in our living with cancer section on Government benefits and charity grants. There is also information on mortgages, pensions, loans and insurance, including travel insurance.

 

Where to get more information

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 treating pancreatic cancer.

If you would like to talk to someone outside your own friends and family, look in our help and support section. There are counselling organisations and organisations that can provide 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 means you will have all sorts of questions going around in your head 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 our cancer information nurses and talk your questions and worries through with them.

It is very common in any family for some people to want to ask difficult questions and some not. Try to respect this and 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 alone. Or, if you are a relative, giving the patient time to talk to the doctor by themselves.

Below, you will find some answers to the questions

Why is the cancer fatal?

Unfortunately cancer of the pancreas is almost always incurable. Very sadly, nearly everyone diagnosed with pancreatic cancer will eventually die of it. But specialists are getting better at helping patients to live for longer after their diagnosis.

Pancreatic cancer is dangerous partly because it is often diagnosed after it has spread. And partly because it is often quite an aggressive cancer. The pancreas 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 means the chemical balance of the body is upset. Normally the body rights this sort of imbalance automatically. But when the balance becomes too out of control, the body cannot cope and becomes overwhelmed.

How will I die and will I have pain?

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 able to be controlled, or at least helped, with treatment from your doctor and specialist 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 the dying with cancer section.

Pain is a common symptom of cancer of the pancreas. But most people are able to have their pain kept well under control. There is some brief information on pain control in pancreatic cancer in this section. We also have a large section on pain control and cancer in our section on coping physically.

Why can't I have a transplant?

Organ transplant is not 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 the body. These will continue to grow whether you have a transplant or not. Added to that, transplant patients 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, as it may be helping you fight it.

How long will I live?

It is very difficult for any doctor to answer this question for you. It is very individual and depends on lots of different factors. For this reason, some doctors try to avoid giving you any estimate at all of how long you may live. If it is very important to you to have some idea of how long you have (not everyone wants to know), 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 longer your doctors are treating you, the easier it becomes to estimate a likely prognosis. 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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Updated: 8 January 2013