Brain tumours

Also called Brain tumour, Glioma, Meningioma

Non-cancerous does not mean harmless when it is inside the skull. Headache alone is rarely the sign; headache with something else usually is.

What it is

A growth in the brain, either starting there or spread from a cancer elsewhere. They are graded from 1 to 4 by how fast they grow.

The distinction between benign and malignant works differently here than anywhere else in the body. A slow-growing, non-cancerous meningioma in the wrong place can cause severe disability or death, because the skull does not stretch and pressure has nowhere to go. People are frequently told their tumour is benign and hear that it is not serious.

Headache on its own is very rarely a brain tumour, which is worth saying plainly because it is a common fear. What raises concern is headache with other features: worse in the morning or on lying down, with vomiting, with new neurological symptoms, or new and persistent in somebody who does not get headaches.

Effects depend far more on location than on size. A small tumour affecting speech or personality changes life more than a larger one somewhere quiet.

Signs you might notice

Headache that is new and persistent, worse in the morning, worse on coughing, bending or lying flat, or waking the person.

A first seizure in an adult. This is one of the commonest presentations and always needs investigation.

Progressive weakness, numbness or clumsiness on one side.

Changes in vision, including double vision or loss of part of the visual field.

Changes in speech, memory, personality or behaviour, which families notice long before anybody else.

Nausea and vomiting, especially in the morning.

999 or A and E: first seizure, sudden severe headache, sudden weakness or speech loss, or reduced consciousness.

How it can affect day-to-day life

The personality and cognitive changes are usually harder on families than the physical ones, and they are the least supported. Somebody can look well, walk into a room, and no longer be able to plan, judge or hold back what they say.

Fatigue after treatment is profound and long-lasting, and routinely under-estimated by everybody except the person.

Driving stops after a seizure or a diagnosis, by law, and losing it is often the loss people mention first.

Epilepsy is common alongside a brain tumour, and needs treating in its own right. See epilepsy.

Steroids reduce swelling and are frequently life-changing in the short term, at the cost of weight gain, mood change, sleeplessness and diabetes risk. Getting the dose down when possible matters.

Supporting someone well

A first seizure in an adult, or a new persistent headache with any other neurological symptom, needs same-day assessment.

Write down what changed and when. Families see the personality and cognitive changes that no clinic appointment will show.

Ask for the clinical nurse specialist and use them; access to a named contact is what most families rate highest.

Ask about a neuropsychology assessment for memory, planning and behaviour changes. It is rarely offered and it explains a great deal.

Ask for occupational therapy for fatigue management and for getting daily life working again.

Ask about steroid reduction, and about bone and stomach protection while on them.

Sort lasting power of attorney and an advance statement early, while the person can take part. See mental capacity.

Where to get help

A GP practice urgently, or A and E for a first seizure or sudden neurological change.

The neuro-oncology clinical nurse specialist.

Brain Tumour Charity run an information and support line.

brainstrust offer one-to-one support and are particularly good at helping people ask the right questions at appointments.