A clear, kind guide

What is a brain tumour?

A brain tumour is a growth of cells in or around the brain. Tumours are described in a few ways:

• Primary tumours start in the brain. Secondary tumours (sometimes called metastases) start elsewhere in the body and spread to the brain.
• Doctors give tumours a grade, usually from 1 to 4. Lower grades tend to grow more slowly. Higher grades tend to grow more quickly. People sometimes use the words “benign” and “malignant”, but the details matter, so ask your team to explain yours.
• Tumours are usually named after the type of cell they begin in, for example gliomas and meningiomas.

According to The Brain Tumour Charity, around 12,000 people in the UK are diagnosed with a primary brain tumour each year. Every tumour, and every person, is different. No two experiences are the same.

Possible symptoms

Symptoms depend on where the tumour is and how it’s affecting the brain. Some people notice:

• headaches that are new, different or keep getting worse
• seizures (fits)
• changes in memory, concentration, mood or personality
• changes in vision, speech or balance
• weakness or numbness on one side of the body
• feeling sick, or very tired

Many of these have other, far more common causes. If you’re worried about any of them, see your GP. If someone has a seizure that doesn’t stop, or sudden severe symptoms, call 999.

How it’s found

Your GP may refer you to a specialist. Tests usually include a scan, such as an MRI or CT. Sometimes a small sample of the tumour (a biopsy) is taken, or removed during surgery, to find out exactly what type it is. A team of specialists, called a multidisciplinary team (MDT), then discusses the best options. Your team should explain the results and what they mean for you, and you can ask them to explain again.

Treatment options

The right treatment depends on the type, grade and position of the tumour, and on your age, general health and wishes. Options your team may talk about include:

• Surgery to remove all or part of the tumour, or to take a biopsy.
• Radiotherapy, which uses carefully aimed radiation to treat tumour cells.
• Chemotherapy and other drug treatments, including targeted therapies for some tumour types.
• Active monitoring (sometimes called “watch and wait”), with regular scans, for some slower-growing tumours.
• Medicines for symptoms, such as steroids to reduce swelling or anti-seizure medicines.
• Rehabilitation, such as physiotherapy, occupational therapy, and speech and language therapy.
• Clinical trials, where suitable (see below).

Only your care team can advise on what’s right for you. It’s fine to ask for a second opinion, and to ask for information in plainer words.

Living day to day

• Tiredness. Fatigue is very common. Pacing yourself and asking for help with chores can make a real difference.
• Memory and concentration. Some people call this “brain fog”. Lists, routines and reminders can help.
• Feelings. It’s normal to feel anxious, low, angry or numb. Talking to someone can help.
• Driving. After a brain tumour diagnosis or a seizure, you may need to stop driving for a time and tell the DVLA. Ask your team, and see GOV.UK: driving and medical conditions.
• Work and money. You may be able to get financial support and workplace adjustments. Macmillan and Citizens Advice can help you work out what’s available.

Clinical trials in the UK

A clinical trial is a research study that tests a new way of preventing, diagnosing or treating a condition. Trials are how treatments improve over time. They can offer access to new approaches, but they are also research, so there’s no guarantee that a new treatment will work better than the usual one.

Good to know

• Taking part is always voluntary, and you can change your mind at any time.
• Each trial has its own rules about who can join. Eligibility is decided by the trial team and your own doctors, not by an app or a website.
• Trials are carefully reviewed and regulated in the UK, and you’ll be given full information before you decide.

How to find trials

• Ask your consultant or clinical nurse specialist first. They know which trials may suit you and which are open near you.
• Be Part of Research (NIHR) lets you search for health research in the UK.
• Cancer Research UK has a clinical trials database and plain-English explanations of trial phases.
• The Brain Tumour Charity and Brain Tumour Research share information on research and trials.

Questions you could ask

• What is this trial trying to find out?
• What would taking part involve, and how often would I need to come in?
• What are the possible benefits and risks, compared with my usual treatment?
• Will it affect my other care or my day-to-day life? Who pays for travel?
• What happens if I want to stop?

If you’re a carer

Supporting someone with a brain tumour is hard, and your own wellbeing matters too. You can ask your local council for a carer’s assessment, share tasks with friends and family, and get support from Carers UK. We’ve written more in For carers: looking after you too.

Where to get help

• Emergency: call 999. For urgent advice that isn’t an emergency: NHS 111.
• NHS: brain tumours: symptoms, tests and treatment.
• The Brain Tumour Charity: information, support and research.
• brainstrust: support for people living with a brain tumour.
• Brain Tumour Research: research and support.
• Macmillan Cancer Support: free helpline 0808 808 00 00, and help with money worries.
• Cancer Research UK: information and trial finder.
• Maggie’s: free emotional and practical support in centres across the UK.
• Samaritans: call 116 123 any time, free.