Finding out you have advanced cancer

You are likely to feel a range of emotions when you find out you have advanced cancer. It is common to feel shocked and frightened, or angry about your situation. Most people find that these feelings become easier to manage with time.

Talking to others may help. If you prefer to talk to someone outside of your family and friends, your doctor or nurse can refer you to a counsellor. If your feelings are becoming hard to manage, you may find it helpful to see a psychologist, for more specialised emotional support.

You may also find it useful to join a support group where you can talk to people who are going through a similar experience to you.

Some people use online support, where they can share their feelings and experiences with other people affected by cancer. Others find it helpful to talk to a religious or spiritual leader or to write down their feelings in a diary.

Complementary therapies may also help to reduce stress and anxiety. Talk to your GP to find out what services are available near you.

Finding out your cancer is advanced

It is common to have many different reactions and feelings when you find out your cancer has come back or spread. Some people may have a cancer that is advanced when they are first diagnosed. For others, the cancer may spread or come back after treatment.

When you first find out your cancer is advanced, you may feel shocked and find it hard to understand. You may feel frightened about the future, or you may feel angry. These feelings usually become easier to manage with time, and as you start making decisions and plans.

We have information and tips to help you manage your feelings.

It is not usually possible to cure an advanced cancer. But some people may live with it for a long time – sometimes for years. Sometimes you may need treatment to control the cancer. But during this time, many people can continue with their day-to-day lives. They can still do the things that are important to them.

Knowing that your illness may not be curable can give you the chance to think about:

  • what is important to you
  • how you want to live your life.

It may be good to focus on things you enjoy and what you want to achieve.

For some people, treatment may no longer be able to control the spread of the cancer. Or they may not be well enough to have treatment. Their cancer doctor (oncologist), specialist nurse or palliative care specialist, will help with managing any symptoms they may have.

Some people may want to think about what they might want to happen if they become less well. For example, they may want to record their wishes about how and where they would want to be cared for. This is called advance care planning.


Coping with your feelings

It is natural to have a range of emotions when coping with advanced cancer. How often and how strong these feelings are will vary. It can be very physically and emotionally tiring when you are uncertain about your future. Most people find that over time they learn to cope with their feelings with support from family, friends and healthcare professionals.

Fear

Many people with advanced cancer feel frightened. You may feel afraid of the illness itself, the symptoms, or the treatment and its possible side effects. You may worry about the effect it will have on your family. People often worry about the future or about dying. Sometimes it helps to talk to a professional, such as a nurse or counsellor, about your fears. Often, talking through the reality of what may or may not happen can make it less frightening. You may find your fears are worse than the reality and that talking puts your mind at rest. Talking to a professional can also help you plan around what might happen. This can help reduce fears.

Anger

It is natural to feel angry if you have advanced cancer. You may feel angry about being unwell and having to cope with treatment and side effects. You might also be angry about the impact the cancer has had on your life and your future. It may have affected your ability to work or your relationships. You may feel frustrated that you need to have tests and treatment, and that your long-term plans are less certain.

There may also be things about your healthcare that make you feel angry. For example, delays in getting test results or treatments may make you feel like this. Talk to your doctors if you feel like this.


Talking about feelings

We all express and manage our feelings in different ways. It may be clear how someone is feeling by their behaviour, what they say and how they say it. But sometimes, one emotion can cover another. For example, a person might be frightened but express this by being short-tempered or irritable. People close to them may not always realise how they are feeling and how much they might be struggling.

Talking about our feelings can help us understand the cause of our behaviour. This is not always easy, so it is important to talk to someone you trust. This could be a family member or friend. For some people, this will give them the support they need.

Some people find it easier to talk to someone outside of their family and friends. Your GP, palliative care nurse or doctors and nurses at the hospital will usually ask how you are feeling. This will give you the chance to talk to them about your feelings and emotions if you want to. You may already feel comfortable enough with them to do this. Or you could tell them that you are struggling with your feelings and would like to talk to someone. They may be able to refer you to someone who is trained to listen, such as a counsellor (see below).

If you are finding it difficult to cope, you may need more specialised emotional support from a psychologist (see below). Your GP or specialist can refer you to one.

Some people find that their family and friends tell them to be positive. No one feels positive all the time, and it can be especially difficult when the future is so uncertain. It is fine to tell your family and friends that you know they mean well, but that it is hard to feel positive sometimes.

Talking to somebody, whether it’s one or two friends or a group of friends – you really need that support. I don’t think you should try to cope on your own.

Divya


Emotional support

Counselling

Counsellors are trained to listen and help people deal with difficult situations. They will not give advice or answers, but will help you find your own answers. Talking one-to-one with a trained counsellor can help you express and understand your feelings. It can also help you find ways to cope with these feelings or the problems they relate to.

GP practices and hospitals often have their own counsellors. If they do not, they should be able to refer you to one. You can talk to one of our cancer support specialists on 0808 808 00 00 to find out about counselling in your area. The British Association for Counselling and Psychotherapy can also give you details of counsellors in your area.

If your family members or friends are finding it difficult to cope, they may find counselling helpful.

Psychological support

Sometimes strong emotions can feel overwhelming and difficult to cope with. These feelings can affect your thinking and behaviour. Some people may have physical symptoms of anxiety or depression such as pain, difficulty sleeping or breathlessness.

If symptoms of anxiety or depression become overwhelming and hard to manage, you may find it helpful to see a clinical psychologist.

Clinical psychologists are often part of the hospital cancer team or the palliative care team. They are specialists in providing psychological and emotional support to people with advanced cancer. Some psychological services will also offer support to carers and family members.

The palliative care team, your cancer doctors or your nurses will be able to make a referral.

Support and self-help groups

Your family and friends may be supportive. But you may find it useful to be with people who are going through a similar experience to you.

There are many support groups for people with cancer and their family and friends. These groups give you the chance to talk to other people who may be in a similar situation or facing the same challenges. It can also help to meet people who have lived with their cancer for a long time and who enjoy life.Not everyone finds talking in a group easy. It may help to try a group to see what it is like and then make a decision.

Not everyone finds talking in a group easy. It may help to try a group to see what it is like and then make a decision.

You can search for groups in your area on our website. Or our cancer support specialists can help you find local groups. Just call 0808 808 00 00.

Online support

Many people now get support on the internet. There are online support groups, social networking sites, forums, chat rooms and blogs for people affected by cancer. You can use these to share your experiences, ask questions, and get and give advice. You might find it useful to visit our Online Community.


Spiritual and religious support

Many people find their faith can offer them emotional support and strength during their illness. Some people may find they become more aware of religious or spiritual feelings. Other people may find themselves questioning their faith when they are told their cancer has come back or spread.

You may find it helpful to talk to a religious or spiritual leader or advisor. They can offer emotional and spiritual comfort, and help you feel more at peace with your situation. Even if you have not attended religious services regularly before or are not sure what you believe, you can still talk to someone. This may be a priest, rabbi, imam or other spiritual advisor, depending on your faith or preference. They are used to dealing with uncertainty and will not be shocked.

Hospices usually provide spiritual support to people of all faiths or no faith. This is often available through their day services.

You may prefer to talk to someone who is not religious. Humanist Care have volunteers who can provide non-religious pastoral support.

Being diagnosed with advanced cancer can make you think about how long you might live and when you will die. Dying is something that is certain for all of us. But it is not something that we talk about very much.

Some people feel calm about the fact that they are going to die. But others are frightened by the thought. Death cafes are opportunities to meet with other people to talk about death.

Being with others who are having similar feelings and emotions can make it easier to talk about your own feelings. Death cafes are led by someone who will help and support the conversation. They are held in different places throughout the country. Some hospices help with these and have dates of when and where they are being held locally. Visit deathcafe.com to find out more.


Medicines that can help

Sometimes feelings of anxiety and depression can affect your ability to cope with everything that is happening. Your GP, hospital specialist or palliative care doctor may be able to prescribe medicines to help you cope. These may be anti-depressants, anxiety-reducing drugs or sleeping pills. Remember, anti-depressants can take a few weeks to take effect. Medication is not likely to change how you think about things. But it might help you feel better so that you can talk to someone about it.

We have more information about the emotional effects of cancer and what can help you to cope.


Things you can do for yourself

There are things you can do yourself that can help you cope with your feelings. Some people find that keeping a diary or journal helps them express their thoughts and feelings. If people are struggling to understand your feelings, you could show them a section of the journal.

Many people use complementary therapies to help them cope with symptoms, stress or anxiety. These therapies include meditation, visualisation, relaxation, aromatherapy or a combination of these techniques. You can learn some of these therapies from CDs or podcasts. Or there may be local classes you can go to. Your GP or practice nurse may know more about what is available in your area.

Mindfulness is about learning to notice what is happening within and around you. It helps you learn to focus on the present moment using techniques like meditation, breathing and yoga. You are encouraged to become aware of your thoughts and feelings, without making judgements about them. This can mean you spend less time worrying about the future.

Mindfulness-based cognitive therapy (MBCT) is a specific technique that may be helpful. It uses the meditation, yoga and breathing techniques of mindfulness. It also uses some cognitive behavioural therapy (CBT) techniques to help you change unhelpful thought patterns. CBT is a talking therapy that can help you to recognise any unhelpful thoughts. It can help you manage your problems by changing the way you think and behave. There are a few centres in the UK that offer MBCT classes on the NHS. Talk to your healthcare team to find out where classes are available.

I think of this incurable cancer as a big, black dog that walks alongside me. I can't shake it off, but I do not have to let it dominate every thought.

Daloni

Back to Coping with advanced cancer

Decisions about treatment

You may have lots of questions about your treatment options. You can talk to your doctors and nurses about these.

Who can help?

You can get care and support at home, in a hospital or in a hospice. This depends on your needs and preferences.

What is CPR?

Cardiopulmonary resuscitation (CPR) can be used to try to restart the heart and breathing if they have stopped.

Making CPR decisions

You may be asked to make a decision with your family and healthcare team about whether you want cardiopulmonary resuscitation (CPR) to be attempted.