Brain Tumours: Care Staff Guide to Symptoms, Treatment and Support

A brain tumour diagnosis changes a person's life and the lives of those close to them. The illness can affect movement, speech, memory, personality and mood, and treatment brings its own demands. Care staff may meet people at many stages: before diagnosis, when new symptoms are first noticed, during treatment and recovery, or in long-term and end-of-life care. This guide, based on NHS information, explains the types of brain tumour, the symptoms to look out for, how tumours are treated and how to give compassionate, practical support.

What is a brain tumour?

A brain tumour is a growth of abnormal cells in or on the brain. The NHS explains that tumours are graded according to how quickly they grow and how likely they are to come back after treatment. Grades 1 and 2 are low grade, and grades 3 and 4 are high grade.

• Non-cancerous (benign) tumours grow slowly and are less likely to return. Most low-grade tumours are non-cancerous.
• Cancerous (malignant) tumours are usually high grade and more likely to return. They may start in the brain (primary tumours) or spread to the brain from elsewhere in the body (secondary tumours).
• Gliomas are cancerous tumours that can be low grade (grade 2) or high grade (grade 3 or 4).

The NHS states that more than 12,000 people are diagnosed with a primary brain tumour in the UK each year, and about half of these are cancerous. Many more people have secondary tumours. Even a non-cancerous tumour can cause serious problems because of its position within the skull.

Symptoms care staff should know

The NHS explains that symptoms depend on which part of the brain is affected. Common symptoms include:

• headaches, especially headaches that feel different from the person's usual ones or that are getting worse
• seizures (fits)
• nausea and vomiting
• drowsiness
• changes in memory or personality
• progressive weakness or paralysis on one side of the body
• problems with vision or speech

Some people have no early symptoms, or symptoms that develop slowly, so they can easily be put down to ageing, stress or other illness. The NHS stresses that having these symptoms does not mean someone has a tumour, but they should be checked. Report new or worsening symptoms promptly, and record when they started, how often they occur and what they look like. Sudden severe symptoms, a first seizure, collapse, or signs of a stroke are emergencies, so call 999 and follow your service's emergency procedure.

Getting a diagnosis

The NHS advises seeing a GP about symptoms, particularly a different or worsening headache. If the GP cannot find a more likely cause, they may refer the person to a neurologist for tests such as a brain scan. Waiting for results can be an anxious time, so be patient, listen and let the person talk about their worries.

Causes and risk factors

The NHS notes that the cause of most brain tumours is unknown. Risk rises with age, although some types are more common in children. Radiation is responsible for only a very small number of cases, and some genetic conditions raise the risk, including tuberous sclerosis, neurofibromatosis types 1 and 2, and Turner syndrome. It is helpful for staff to know this, because people and relatives often wonder whether something they did caused the tumour. Reassure them that in most cases there is no known cause and nobody is to blame.

Treatment

The NHS explains that treatment depends on the type of tumour, where it is, its size and spread, how abnormal the cells are, and the person's general health. Options include:

• Steroids to reduce swelling around the tumour
• Medicines for symptoms, such as anti-epileptic medicines for seizures and painkillers for headaches
• Surgery to remove as much of the abnormal tissue as can be done safely
• Radiotherapy and chemotherapy, which may be used when not all of a tumour can be removed

Treatment of non-cancerous tumours is often successful, and a full recovery is possible, although some can return and regular follow-up may be needed. According to the NHS, the outlook depends on the person's age, the type and position of the tumour, how well treatment works and general health. Because brain tumours are uncommon and varied, survival is hard to predict, but the NHS says that around 17 out of every 100 people with a cancerous brain tumour survive five years or more after diagnosis. Staff should not quote statistics to people or families unless asked and appropriate. Leave outlook conversations to the specialist team and offer support afterwards.

Supporting someone with seizures

Seizures are common with brain tumours. Follow the person's seizure care plan, learn basic first aid for seizures, time every seizure, and call 999 if a seizure lasts longer than the time stated in their plan, if it is their first seizure or if there is injury or breathing difficulty. Our guide to epilepsy awareness and buccal midazolam training explains what staff need to know, including emergency medicines. Seizures can also affect whether a person is allowed to drive, so the clinical team should advise on driving rules and licensing.

Cognitive, communication and emotional changes

Depending on where a tumour is, a person may have problems with memory, concentration, planning, speech or understanding, and may seem different in personality or mood. These are caused by the illness or its treatment, not by the person. Practical steps include:

• keep routines predictable and break tasks into small steps
• use short sentences, give time to answer and check understanding, using the techniques in our guide to aphasia and communication support
• use written reminders, calendars and photographs
• stay calm if the person is irritable, anxious or disinhibited, and avoid arguing
• watch for tiredness, which is common during and after treatment

Anxiety, low mood and fear about the future are understandable, and relatives need support too. Make time to listen and know where to signpost. Cancer Research UK, mentioned by the NHS, provides information, and specialist brain tumour charities offer support to people and families.

Rehabilitation and long-term care

Some people are left with weakness, balance problems, vision or speech difficulties after surgery or treatment. Physiotherapy, occupational therapy and speech and language therapy can help, and the principles in our guide to acquired brain injury in care homes apply to many people. Fatigue, pressure care, nutrition and falls risk need careful attention.

Frequently asked questions

Are all brain tumours cancerous?

No. The NHS explains that most low-grade tumours are non-cancerous, and about half of primary brain tumours diagnosed each year in the UK are cancerous.

Does a bad headache mean a brain tumour?

Usually not. The NHS says that you may not have a tumour but a headache that is different from usual or getting worse should be checked by a GP.

Can someone with a brain tumour still live well?

Many people have good periods and, for non-cancerous tumours, the NHS says treatment is often successful. Individual outlook depends on many factors, and the specialist team can explain it.

Keep building your knowledge

Confident, compassionate staff make a real difference to people facing serious illness. Explore the health and social care learning available through Learnsignal CPD to keep your knowledge up to date.

This article is general information for care staff, based on published NHS guidance, and does not replace the advice of a person's own clinicians.