Brain tumours (primary) and brain metastases in over 16s

Brain tumours: the care you should expect

A brain tumour is a tumour affecting the brain. Brain tumours can be malignant (cancer) or non-malignant. Each year about 10,000 people are diagnosed with a primary brain tumour, which means the tumour started in their brain. Sometimes a cancer in another part of the body can spread to the brain, which is called a secondary brain tumour or metastasis. There are many different types of brain tumour and they can cause a wide range of symptoms depending on the kind of tumour, where it is, where it has come from, if it is a metastasis and how quickly it is growing. The outlook for each person with a brain tumour will be different. Because no 2 people are affected in the same way, the care and treatment each person needs is unique to them.

We want this guideline to make a difference to people with a brain tumour and their families by making sure:  

• doctors know which tests and treatments work best for different types of tumour
• doctors fully involve you in treatment decisions, explaining the pros and cons of each option and agreeing a treatment plan that’s best for you
• you get support and advice that meets all your needs – this should include practical advice on things like getting extra help at home and whether you can still drive
• your family or carer gets help to understand and cope with changes they might see in you because of the brain tumour
• you get the right check-ups at the right time during and after your treatment.

Making decisions together

Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.

To help you make decisions, think about:

• What matters most to you?
• What do you want to get out of any treatment?
• What are you most worried about – are there risks or downsides to the treatment that worry you more than others?
• How will the treatment affect your day to day life?
• What happens if you don’t want to have treatment?

If you can’t understand the information you are given, tell your healthcare professional.

Read more about making decisions about your care.

In the news

Read NICE news about how this guideline will help.

More people to be given dye to highlight brain tumours to surgeons, says NICE

Hundreds of patients a year set to benefit from roll out of dye to all of England’s neurosurgical units.

See what NICE says

Where can I find out more?

NHS Choices has more information about brain tumours.

The organisations below can give you more advice and support.

• Brainstrust – the brain cancer people, 01983 292 405
• The Brain Tumour Charity, 0808 800 0004
• Epilepsy Action, 0808 800 5050
• Brain and Spine Foundation, 0808 808 1000

NICE is not responsible for the content of these websites.

To share an experience of care you have received, contact your local Healthwatch.

We wrote this guideline with people who have been affected by brain tumours and staff who treat and support them. All the decisions are based on the best research available.

ISNB: 978-1-4731-3002-9