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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 feel a range of powerful emotions.

Having an advanced cancer usually means your cancer cannot be cured. Your doctor may offer you treatment to try to slow the growth of your cancer and relieve symptoms. You will need to talk to your own specialist to understand what the diagnosis means for you. They can tell you what treatment is available and how it 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 (also called palliative care nurse). These are specialist nurses who can work with you and your doctor to help control your cancer symptoms and improve your well being.

Support is available at your hospital, local hospice and GP practice, as well as from support groups. Getting support can help you and your family to cope.
 

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

 

 

What advanced cancer means

Advanced cancer usually means your cancer cannot be cured. But your doctor may suggest treatment to try to slow its growth and relieve symptoms.

You will need to talk 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 likely 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 may no longer be realistic. But you do not have to abandon all your plans. 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.

 

Your feelings

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

You are likely to feel a range of powerful emotions at first. 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 really 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 to someone straight away to help you work out how you are feeling. You should do whatever feels right for you.

You may find yourself wondering why you have the cancer. 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. We do not know why some people get particular cancers and others who behave the same way (or worse) do not. This uncertainty can be very difficult to deal with. You may feel you have to know why you have 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 risks and causes of pancreatic cancer in the about pancreatic cancer section.

You can get support both emotionally and practically through your hospital, local hospice and GP practice, as well as charities and support groups. You can look on our pages about pancreatic cancer organisations and general cancer organisations for help.

 

Coping with everyday life

It is important that you feel as well as you possibly can. If you have symptoms, ask your doctor or nurse about a referral to a symptom control nurse (sometimes called a Macmillan nurse or palliative care nurse). 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 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 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 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 contact our cancer information nurses and talk your questions and worries through with them.

It is common in any family for some people to want to ask difficult questions and some not. 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, giving the person with cancer time to talk to the doctor by themselves.

Below, you will find some answers to the questions

Why is the outlook of my cancer poor?

Unfortunately cancer of the pancreas is often incurable. Very sadly, most people 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 generally has a poor outlook because it is usually diagnosed after it has spread. 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 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. It should be possible to control any symptoms you have with treatment from your doctor and specialist nurse. 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 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 for pancreatic cancer. 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 the immune system may be helping you fight it.

How long will I live?

It is very difficult for anyone to answer this question for you. Your doctor or specialist nurse is in the best position to give you an idea, but even they can't be sure. 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 (your prognosis). Not everyone wants to know, but many people do. If it is very important to you to have some idea of how long you have, explain this to your doctors. You can say that you do not expect them to be completely accurate, but you would like to have an idea so 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 are likely to live.

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Updated: 7 June 2014