Finding out you have advanced cancer

You’re likely to feel a range of strong emotions when you find out you have advanced cancer. It’s 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 can be very helpful. This could be someone close to you, though you may prefer to talk to someone you’re not so close to. If you’d like to talk to someone else, you could ask your GP or the hospital staff to refer you to a counsellor or support group.

If you’re finding your feelings difficult to cope with you may be referred for psychological support.

Some people also use the internet to find online communities where other people affected by cancer share their feelings and experiences.

Others find support by talking to a religious leader or by writing 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.

Coping with the news

It’s common to be overwhelmed by different 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.

Although it is rare for advanced cancer to be cured, some people may live with it for a long time – sometimes for years. This may mean having treatments when you need them. Sometimes you may need ongoing treatment to control the cancer.

During this time, many people can carry on with their day-to-day lives and do the things that are important to them.

For some people, it may not be possible to control the cancer any longer or they may not be well enough to have treatment. In this case, their cancer doctor or specialist nurse will make sure they have treatments to manage any symptoms they may have.

When you first find out your cancer is advanced, you may feel shocked and find it hard to take in. You may feel frightened about the future, or angry with other people or yourself. These feelings usually become more manageable with time, and as you start making decisions and plans.

Knowing that your illness may not be curable can give you the chance to decide what’s important to you, and how you want to live your life. Concentrating on what you can enjoy and achieve can be satisfying. It may also help you cope if you find you can’t meet other goals.

Some people may want to think about what they might want if they were to 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 sometimes called advance care planning.


Coping with your feelings

It is natural to have a mix of emotions when you are coping with advanced cancer. How often and how strongly you have these feelings will vary. Living with the uncertainty that comes with advanced cancer can be physically and emotionally demanding. But people often find that over time they can cope with their feelings more easily.

Fear

Many people with advanced cancer feel frightened. You may have times when you 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 it may actually put your mind at rest.

Anger

It is natural to feel angry if you have advanced cancer. You may feel angry about feeling unwell, going through treatment and having to cope with the side effects. You could also be angry about the impact the cancer has had on your life. It may have affected your ability to work or your relationships. You may feel frustrated that your plans will be disrupted by tests and treatment, and that your long-term plans have suddenly become uncertain.

There may also be things about your healthcare which may cause you to feel angry. For example, delays in tests or treatments. If this is the case it is worth talking it through with your doctors.


Talking about feelings

We all express our feelings in different ways. It is often clear how someone is feeling by their behaviour, what they say and how they say it. However, sometimes one emotion can disguise another. For example, a person might be frightened but express their fear by being short-tempered, irritable, or angry with those around them. Talking about our feelings can help us understand our behaviour and what’s behind it. But this isn’t always easy.

If you can, find someone you can talk to about how you feel. This could be a family member or friend, but some people prefer to talk to someone outside of this circle of people. Your GP, palliative care nurse or doctors and nurses at the hospital will usually ask how you are. This will give you the chance to talk about your feelings and emotions if you want to. You might find this easy if you already know and feel comfortable with them. If you would prefer to talk to someone else, they may be able to refer you to someone who is trained to listen, such as a counsellor.

If managing your feelings is causing a lot of difficulties, you may be referred for psychological support.

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’s 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 may be able to help you find your own solutions to the problems you are facing. Cancer can affect many aspects of your life, so this can be very helpful. Talking to someone who is supportive and not personally involved in your situation can also help those close to you.

Your GP or hospital doctor may be able to refer you to a counsellor. Or you may prefer to go to someone independent. We can give you information about how to find counselling in your area.

Counselling is available for your relatives, too. They may also be struggling emotionally.

Psychological support

Sometimes emotions such as anger and fear can be symptoms of anxiety and depression. These feelings can be difficult to cope with. Some people may have physical symptoms of anxiety and depression such as pain or breathlessness. If symptoms of anxiety or depression become overwhelming, it may be possible to have psychological therapy from a clinical or counselling therapist.

Your GP or practice nurse may know more about what is available in your area. You may be able to get psychological support at the hospital. The palliative care team, your cancer doctors or your nurses will be able to make a referral.

Support and self-help groups

However supportive your family and friends are, you may find it useful to spend some time with people who are going through a similar experience to you.

There are many support groups for people with cancer and their relatives. 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 be helpful 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 go along to see what the group is like and then make a decision.

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 issues

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.

In either situation, talking to a religious or spiritual leader may help. Their role is to offer emotional and spiritual comfort, and to help you feel more at peace with your situation.

Even if you haven’t attended religious services regularly in the past or aren’t sure what you believe, you can still talk to a religious leader. This may be a priest, rabbi, imam or other religious leader, depending on your faith or preference. They are used to dealing with uncertainty and won’t be shocked.


Medicines that can help

Sometimes feelings of anxiety and depression start to affect your ability to deal with everything that is happening to you. In this case, 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 start working.

We have more information on coping with the emotions you may be feeling.


Things you can do for yourself

There are a number of 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.

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 complementary 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’s available in your area.

Mindfulness is an approach that can help you change the way you think about different experiences. It aims to reduce stress and anxiety. It helps you 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.

A specific technique, called mindfulness-based cognitive therapy (MBCT), may be helpful. It uses the meditation, yoga and breathing techniques of mindfulness, along with some cognitive behavioural therapy (CBT) techniques to help you change your thought patterns. Cognitive (thinking) therapy focuses on any difficulties you are facing at the moment and looks for ways to change your current state of mind. This helps your thoughts become more positive. There are a few centres in the UK that offer MBCT classes on the NHS.