Coping and support when you have lung cancer

Coping with lung cancer can be difficult. There are things you can do and specialists who can help you to cope with a diagnosis of lung cancer or metastatic lung cancer.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

If you have metastatic lung cancer

Finding out that you can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal to not be able to think about anything else.

Lots of information and support is available to you, your family and friends. Some people find it helpful to find out more about their cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

• what your diagnosis means

• what is likely to happen

• what treatment is available

• how treatment can help you

• what the side effects of the treatment are

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Planning if you have metastatic cancer

Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.

Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.

You can talk to your doctor about managing your treatment around your plans. Or if you can have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Cancer chat 

You can chat with other people affected by cancer in our online forum.

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.

Physical problems of lung cancer

Lung cancer and its treatments are likely to cause physical changes in your body. These might affect the way you feel about yourself.

Breathlessness

You may have symptoms such as a cough or breathlessness. Feeling breathless is a problem for some people. This can be quite distressing, particularly if you have metastatic cancer.

You can have oxygen at home. Treatments or medicines can also help you to breathe more easily.

A build up of fluid around the lung

A build up of fluid around the lung is called a pleural effusion. Tell your doctor if you have any difficulty breathing or chest pain. Draining the fluid can help you to breathe more easily.

Weight loss or hair loss

Changes such as weight loss and hair loss can affect your self esteem and the way you relate to other people.

Your dietitian can help you with any weight loss issues and your nurse can help you look at ways to cope with hair loss.

Tiredness

Tiredness and feeling lethargic a lot of the time are common during treatment and for some months afterwards. These symptoms are also common when you have metastatic lung cancer.

Resting but also doing some gentle physical activity can help.

Scarring and pain

Surgery can cause scarring, or you might have pain after your operation. Talk to your doctor or nurse if pain is a problem. There are lots of things they can do to help. These include changing your pain medicines or supporting you with relaxation techniques.

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Support at home for you and your family

You might need some care and support at home due to lung cancer, its treatment or when you have metastatic lung cancer. A lot of practical and emotional support is available to you. 

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.

Support groups

The NHS has a service that tells you about local information and support.

Asthma and Lung UK can offer help and support. You can phone their helpline to talk to someone on 0300 222 580.