Living with a brain tumour

Sunday 1 May, 2016

Download PDF Order FREE booklet

On this page: Rehabilitation | Managing seizures | Driving | Key points


Many people experience changes in the way their body functions as a result of a brain or spinal cord tumour, or treatment for these tumours. You or your family members may notice changes in your speech, personality, memory, movement, balance and coordination. If you notice some differences in behaviour, talk to your doctor, nurse or care coordinator.

Emotionally, these changes may be difficult to cope with. You might find that your self esteem and your relationships, especially with those close to you, 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.

The brain can sometimes heal itself after treatment, but this can be a slow process. Many patients require some rehabilitation to help restore their abilities or manage changes. The type of therapy you have depends on your needs, choices and what is available.

Children and brain tumours

School-aged children with brain tumours may benefit from tutoring as part of their rehabilitation. This may be available through children’s charities such as Redkite and CanTeen. Ask your child’s school if they have a copy of Cancer Council’s Cancer in the School Community, or talk to the student welfare coordinator, school counsellor or the principal. You can also ask the medical team for information about how the tumour and treatment may have affected your child.

Rehabilitation

Cognitive rehabilitation

If your memory, language skills or concentration is affected, a neuropsychologist, speech pathologist or occupational therapist may help you to improve your cognitive skills using memory activities, diaries and language puzzles.

Physiotherapy

In some cases, physiotherapy can help you to learn how to move more easily. It can also help you to develop, maintain or regain strength and balance. Moving and strengthening your muscles can help reduce tiredness. If you can’t move easily, you may be able to learn compensation techniques, such as using a walking stick. You may also be given 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 their tumour or their treatment impacts on their ability to perform everyday activities (e.g. preparing a meal). Occupational therapy aims to help you to return to the activities that are important to you. A range of physical or cognitive strategies are used to manage fatigue and improve or maintain your independence.

Assistance for vision impaired

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. For more information, call 1300 847 466.

Managing seizures

If you are diagnosed with a brain tumour, you may experience seizures, which are disruptions to the normal patterns of electrical impulses in the brain.

Seizures are sometimes called fits or convulsions. They can often be prevented with anti-convulsant medication (also called anti-epileptic or anti-seizure medication). You can minimise your seizure risk by making sure you don’t get too tired or fatigued.

Grapefruit, Seville oranges and certain herbal medicines may change the way some anti-convulsants work. You should also limit your alcohol intake.

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 control of their bladder or bowel and bite their tongue.

Partial seizures

These affect one part of the body, such as an arm or a leg. Symptoms include twitching; jerking; tingling or numbness; altered sensations (hallucinations), such as changed vision or hearing, sensing strange tastes or smells, or a feeling of déjà vu. Partial seizures may cause a brief loss of consciousness.

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 to floor if possible, loosen clothing, place a soft pillow under their head and shoulders).
  • Lie the person on their side to clear their airway. This is particularly important if they have vomited, are unconscious or have food or fluid in their mouth.
  • If help is needed, call an ambulance (000).
  • Observe the person until they have recovered or the ambulance arrives.
  • Time how long the seizure lasts so you can advise 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 after having a seizure as most seizures are exhausting.
  • For detailed information about seizures, contact Epilepsy Action Australia on 1300 374 537.
Anti-convulsant medicines

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

Side effects of anti-convulsant drugs vary and may include tiredness, weight changes, gum problems, tremors, nausea, vomiting and depression. 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 your dose to reduce any side effects, or can give you another type to try. It is important not to stop taking the medicine or change the dose without your doctor’s advice.

Driving

Benign and malignant tumours, seizures, and certain treatments and medications (such as anti-convulsants and some pain-killers) can cause changes in vision, mobility, coordination, perception and judgment. These changes can affect a person’s driving skills.

If you are diagnosed with any type of brain tumour it is very important to ask your doctor how your condition or treatment will impact on your ability to drive. When you are first diagnosed with a brain tumour your doctor may advise you not to drive for a period of time. You may also be advised not to drive for a period after surgery, radiotherapy and chemotherapy.

Always check with your doctor before resuming driving. Laws in Australia require drivers to report any permanent or long term illness or injury that is likely to affect their ability to drive to their driver licensing authority. Your doctor can advise you if you should report your condition or if there are any temporary restrictions. The licensing authority will request information from your doctor to decide if you are medically fit to drive.

You may be referred to a neurologist to assess your fitness/ suitability to return to driving. This may include doing an electroencephalogram (EEG) to assess your seizure risk. You may also have an occupational therapy driving assessment. This can determine the type of difficulties you are experiencing while driving (for example, a slow reaction time).

The focus of a driving assessment is not to suspend or cancel your licence. In some cases, an occupational therapist is able to teach you driving techniques to address your weaknesses or instruct you on how to use car modifications (such as additional 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 are no longer able to drive or they have restrictions placed on their licence. These reactions are natural and understandable.

Changes in your ability to drive can affect your sense of independence and may impact on your family too. However, it may help to remember that the decision is made for your safety and wellbeing. It is also made for the safety of passengers, pedestrians and other road users who could be injured if your driving is unsafe. If you have to stop driving, you may want to talk to a counsellor or someone who has been through a similar experience. Depending on your situation and your ongoing health, it may be possible to return to driving at a later stage.

For more information, talk to your doctor or visit the Frequently Asked Questions under ‘Assessing Fitness to Drive’ on the Austroads website.

The impact of licence changes

If your licence has restrictions but you ignore them 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 whilst driving, you could be charged with a criminal offence and your insurance policy will no longer be valid.

"I was diagnosed with a grade 4 glioblastoma multiforme that couldn’t be operated on, so I had radiotherapy and chemotherapy. I needed to stop work and I couldn’t drive. I found it all mentally draining, but eventually my scans came back clear." - John

Key points

  • Many people experience changes in the way their body functions as a result of a brain or spinal cord tumour, or treatment for one.
  • You or a family member may notice changes to speech, personality, memory, movement, balance and coordination.
  • Emotionally, these changes may be difficult to cope with. Talking to a counsellor or someone who has had a similar experience may help.
  • Many patients require some rehabilitation to help restore their abilities or manage changes. The type of therapy you have will depend on your needs, choices and what is available.
  • If your cognitive function is affected, a neuropsychologist, speech pathologist or occupational therapist may help improve memory, language skills and concentration.
  • Physiotherapy can help you to learn how to move more easily, maintain or regain strength and balance.
  • Speech therapy may assist if your ability to talk has been affected.
  • People living with a brain tumour may experience seizures. Anti-convulsants may be prescribed.
  • Living with, or being treated for a brain or spinal cord tumour may affect your ability to drive.
  • Laws in Australia require drivers to report any permanent or long term illness or injury that may affect their ability to drive. Ask your doctor how your condition or treatment is likely to affect your driving ability.

Reviewed by: A/Prof Matthew Foote, Associate Professor, University of Queensland and Staff Specialist, Radiation Oncology, Princess Alexandra Hospital, QLD; Dr Jason Papacostas, Neurosurgeon, Mater Private Hospital, QLD; Dr Dianne Clifton, Psychiatrist and Coordinator of Education, Psychosocial Cancer Care and Palliative Care, St Vincent’s Hospital, VIC; A/Prof Georgia Halkett, Assocaite Professor, Senior Research Fellow, School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, WA; Lawrence Cher, Neurologist and Neuro-oncologist, Olivia Newton John Cancer & Wellness Centre, Austin Hospital, VIC; Kate Brennan, Occupational Therapist, Princess Alexandra Hospital, QLD; Vivien Biggs, Neuro-oncology nurse practitioner, Briz Brain & Spine, QLD; Lindy Cohn, 13 11 20 advisor, Cancer Council NSW, NSW; Ms Dianne Legge, Brain Tumour Support Officer, Cancer Services, Olivia Newton-John Cancer & Wellness Centre, Austin Hospital, VIC; Russ Talbot, consumer, SA.

Phone

Can’t find what you’re looking for?

Call 13 11 20 13 11 20 to speak with an experienced cancer nurse or email a nurse here . To speak with a nurse through an interpreter, call 13 14 50 13 14 50.

Contact a cancer nurse