Living with a brain tumour

Sunday 1 April, 2018

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On this page: Types of rehabilitation | Managing seizures | Driving | Working | Key points


A brain or spinal cord tumour and its treatment can change how the mind and body work. You or your family members may notice changes in your speech, personality, memory, movement, balance and coordination. If you or your family feel like you are behaving differently, talk to your doctor, nurse or cancer care coordinator. The types of changes will depend on what part of the brain is affected by the tumour and what treatment you have had.

Rehabilitation is treatment designed to help people recover from injury or disease. After brain tumour treatment, most people need rehabilitation assessment and therapies (see below). These can help restore your previous abilities or help you adjust to any changes. The changes may be difficult to cope with emotionally, and you might find that your self-esteem and your relationships are affected. Talking to a counsellor or someone who has had a similar experience may help. Call Cancer Council 13 11 20 to see what support is available close to you.

Children at school

School-aged children with brain tumours may benefit from tutoring as part of their rehabilitation. This may be available through the Ronald McDonald Learning Program or Redkite. Talk to the student welfare coordinator, school counsellor or principal at your child's school and check that they have a copy of Cancer Council's Cancer in the School Community. The medical team can provide information on how the tumour and treatment may have affected your child.

Types of rehabilitation

A range of therapies can support you in your recovery. These may be available at your cancer treatment centre, or you may be referred to a rehabilitation specialist for treatment through a rehabilitation hospital or service team. You may also be referred to individual allied health professionals (e.g. physiotherapists) in private practice.

Cognitive rehabilitation

Your memory, language skills, concentration, or planning and problem-solving skills (executive function) may be affected. A neuropsychologist, speech pathologist or occupational therapist can help improve these cognitive skills using memory activities, speech therapy, diaries and language puzzles.

Physiotherapy

In some cases, physiotherapy can help you learn how to move more easily. It can also help you to develop muscle strength and balance. Moving and strengthening your muscles can reduce tiredness or weakness related to cancer treatment. If you can't move easily, you may be able to learn techniques, such as using a walking stick, so you can become more independent.

Exercise

A physiotherapist or an exercise physiologist can give you advice on how to exercise safely and stimulate parts of your body to improve circulation and reduce swelling.

Speech therapy

If your ability to talk has been affected, a speech pathologist may be able to help. Speech pathologists also work with people who have difficulty swallowing (dysphagia).

Occupational therapy

Some people find the tumour or its treatment affects their ability to perform everyday personal activities (e.g. showering, dressing, preparing a meal). An occupational therapist can help you to return to the activities that are important to you. A range of strategies and aids can help you manage fatigue and improve or maintain your independence.

Help with vision impairment

Some people may lose some or all of their sight as a result of a brain tumour or surgery. Vision Australia can help people learn how to live independently. Call 1300 84 74 66 or go to visionaustralia.org.

Managing seizures

A brain tumour or its treatment can sometimes cause seizures, which are disruptions to the normal patterns of electrical impulses in the brain. They may also be called fits or convulsions.

Seizures can often be prevented with anticonvulsant medicines (also called anti-epileptic or anti-seizure medicines). You can also reduce your seizure risk by making sure you don't get too tired or fatigued.

Generalised seizures

These types of seizures typically affect the whole body. The most common type is called a tonic-clonic seizure (previously known as a grand mal seizure). A seizure often starts with a sudden cry, followed by the person falling down and losing consciousness. The person's muscles may twitch violently and their breathing may be shallow for up to two minutes. They may lose bladder and bowel control, and bite their tongue.

Partial seizures

These affect one part of the body, such as an arm or leg. Symptoms include twitching; jerking; tingling or numbness; and altered sensations (hallucinations), such as changed vision or hearing, strange tastes or smells, or a feeling of deja vu. Partial seizures may cause a brief loss of consciousness, changes in mood, and memory loss just before, during and after the seizure.

Ways to help someone having a seizure

  • Remain calm and stay with the person while they are having a seizure, but do not restrain them or put anything in their mouth.
  • Protect the person from injury (e.g. move hazards, lower them to the floor if possible, loosen clothing, place a soft pillow under their head and shoulders).
  • Lie the person on their side to clear their airway after jerking stops. This is particularly important if the person has vomited, is unconscious or has food or fluid in their mouth.
  • Call 000 for an ambulance if it is the first seizure the person has had; if the person is injured; if there was food or water in the person's mouth; if the seizure lasts longer than five minutes; or if you are in any doubt.
  • Observe the person until they have recovered or the ambulance arrives. Time how long the seizure lasts so you can tell the paramedics.
  • Talk to the person and explain what has occurred. In many cases, people are confused after a seizure.
  • If the seizure occurs while a person is in a wheelchair or car, support their head and leave them safely strapped in their seat until the seizure is over. Afterwards, remove the person from their seat, if possible. Roll them onto their side if there is food, water or vomit in their mouth.
  • Allow the person to rest afterwards as most seizures are exhausting.
  • For detailed information and an online tool for creating a Seizure Management Plan, visit Epilepsy Action Australia at epilepsy.org.au or call 1300 37 45 37.

Anticonvulsant medicines

There are many types of anticonvulsant drugs, which are used to prevent seizures. You may require blood tests while you are taking anticonvulsants. This is to check whether the dose is effective and how your liver is coping with the medicine.

Side effects of anticonvulsant drugs vary, but they may include tiredness, gum problems, shakes (tremors), nausea, vomiting, weight changes, depression, irritability and aggression. If you are allergic to the medicine, you may get a rash. Tell your medical team if you have any skin changes or other side effects. Your doctor can adjust the dose or try another anticonvulsant. Do not stop taking the medicine or change the dose without your doctor's advice.

If you are taking anticonvulsants, you may need to avoid eating grapefruit and Seville oranges, and check with your doctor before taking any herbal medicines, as these can change the way some anticonvulsants work. You should also limit your alcohol intake.

Driving

Tumours, seizures, and certain treatments and medicines (such as anticonvulsants and some pain medicines) can change your vision, mobility, coordination, perception and judgement. These changes can affect driving skills and may make it unsafe for you to drive.

If you are diagnosed with any type of brain tumour, it is very important to ask your doctor how your condition or treatment will affect your ability to drive. When you are first diagnosed with a brain tumour, your doctor will probably advise you not to drive for a period of time. You probably also won't be able to drive for some time after surgery and possibly after radiation therapy.

Before you start driving again, always check with your doctor. Laws in Australia require drivers to tell their driver licensing authority about any permanent or long-term illness or injury that is likely to affect their ability to drive. Your doctor can advise you if you should report your condition or if there are any temporary restrictions. The licensing authority may request information from your doctor to decide if you are medically fit to drive.

Returning to driving

You may be referred to an occupational therapist driving assessor or to a neurologist or rehabilitation specialist to check your ability to return to driving. This may include doing an electroencephalogram (EEG) to assess your seizure risk.

An occupational therapy driving assessment can determine the type of problems you may be experiencing while driving (for example, a slow reaction time). The focus of the assessment is not to suspend or cancel your licence – it is to work out if it is possible for you to return to driving safely.

In some cases, an occupational therapist can teach you driving techniques to help with weaknesses or how to make changes to your car (such as extra mirrors). You may also be able to drive with restrictions, such as only in daylight, only in vehicles with automatic transmission, or only short distances from home.

Some people feel upset or frustrated if they have restrictions on their licence or can no longer drive. You may feel that you have lost your independence or be worried about the impact on your family. If you have to stop driving, the occupational therapist can provide you with alternative options. You may also want to talk to a counsellor or someone who has been through a similar experience. Depending on your situation and your health, it may be possible to return to driving at a later stage.

For more information about driving assessments, talk to your doctor or visit the "Assessing Fitness to Drive" section on the Austroads website at austroads.com.au.

Importance of following restrictions

It is very important to observe any licence restrictions. If your doctor has said you are not safe to drive again, you must not drive unless they change that medical decision. If you ignore the restrictions or drive unsafely, your licence may then be suspended or cancelled. If your licence has been suspended or cancelled, but you keep driving, you may be fined. In addition, if you have an accident while driving, you could be charged with a criminal offence and your insurance policy will no longer be valid.

"I had a craniotomy for a benign brain tumour but they couldn't take all the tumour out. Later I had radiation therapy. Part of the tumour is still there, but it is stable, so I have been able to return to work and I can now drive again." - Debbie
"I was diagnosed with a grade 4 glioblastoma that couldn't be operated on, so I had radiation therapy and chemotherapy. I needed to stop work and I couldn't drive. I found it all mentally draining." - John

Working

It can be hard to predict how well you will recover from treatment for a brain tumour, and when and whether you will be able to return to work. This may also depend on the type of work you do.

Some people find it hard to concentrate or make decisions after treatment. At least at first, it may not be safe to operate heavy machinery or take on a lot of responsibility. A rehabilitation specialist can advise you about whether returning to work is safe or possible. They can also give your employer information about whether you could return to work with altered duties or on a part-time basis.

Talk to your employer about adjusting your duties or working part-time until you have recovered. In some cases, it won't be possible to return to your former role. This can be hard to accept and it may help to talk to the hospital social worker, call Cancer Council 13 11 20 or find a brain tumour support group.

Key points

  • Many people experience changes in the way their body works after a brain or spinal cord tumour and its treatment.
  • You or your family may notice changes to speech, memory, personality, balance, coordination and movement. Most of these can be improved with rehabilitation therapies.
  • These emotional and physical changes may be hard to cope with. Talking to a counsellor or someone who has had a similar experience may help.
  • Physiotherapy can help you learn how to move more easily, and maintain or regain strength and balance.
  • Speech therapy may assist if your ability to talk or swallow has been affected.
  • Occupational therapy can help you regain independence in tasks such as showering, dressing and meal preparation.
  • People living with a brain tumour may experience seizures. Anticonvulsants may be prescribed.
  • The rehabilitation you have will depend on an assessment of your needs, your choices and what support is available.
  • A neuropsychologist, speech pathologist or occupational therapist can offer various strategies to help improve memory, language skills and concentration.
  • Living with or being treated for a brain or spinal cord tumour will probably affect your ability to drive and work, at least for a time after treatment.
  • Laws in Australia require drivers to report any long-term or permanent illness or injury that may affect their ability to drive safely.

Reviewed by: Dr Brindha Shivalingam, Neurosurgeon, Chris O'Brien Lifehouse, NSW; Conjoint A/Prof Andrew Cole, University of New South Wales, Senior Staff Specialist and Director, Cancer Rehabilitation Service, Greenwich Hospital Rehabilitation Service, and Chief Medical Officer, HammondCare, NSW; Laraine Cross, Senior Clinician, Social Work and Psychosocial Oncology Services, Calvary Mater Newcastle, NSW; Dr Anthony Dowling, Medical Oncologist, St Vincent's Hospital Melbourne, VIC; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Ian Gelling, Consumer; Anne King, Cancer Nurse Coordinator Neuro-oncology, WA Cancer and Palliative Care Network, WA; Jodie Nixon, Team Leader Cancer Occupational Therapy, Princess Alexandra Hospital, Brisbane, QLD; Prof Tamara Ownsworth, School of Applied Psychology, Griffith University, QLD; Dr Claire Phillips, Radiation Oncologist, Breast and Neuro-oncology, Peter MacCallum Cancer Centre, VIC.

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