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Understanding Brain Tumours A guide for people with brain or spinal cord tumours and their families and friends.

Understanding Brain Tumours CCNSW

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Page 1: Understanding Brain Tumours CCNSW

Understanding Brain Tumours A guide for people with brain or spinal cord tumours and

their families and friends.

Page 2: Understanding Brain Tumours CCNSW

Understanding Brain Tumours

A guide for people with brain or spinal cord tumours and their families and friends.

First published 1995 (as Brain Cancer)This edition 2003© The Cancer Council New South Wales 2003ISBN 186507 077 7

Acknowledgements

We thank Ines Vansevenant, Sydney Neuro-Oncology Group support andresearch co-ordinator; Dr Helen Wheeler, medical oncologist, Royal NorthShore Hospital and North Shore Private Hospital; Denis Strangman, ofCancer Voices NSW, and John McDonald for reviewing the booklet.

We thank The Cancer Council Victoria for allowing its booklet, Brain andSpinal Cord Tumours, to be used as the basis for this booklet.

Series editor: Marge OversEditor: Helen FrancombeCartoonist: Greg Smith

The Cancer Council New South Wales

The Cancer Council is the leading cancer charity in New South Wales. It plays a unique and important role in the fight against cancer throughundertaking high-quality research, advocating on cancer issues, providinginformation and services to the public and people with cancer, and raisingfunds for cancer programs.

This booklet is funded through the generosity of the people of New SouthWales. To make a donation to help defeat cancer, visit The Cancer Council’swebsite at www.cancercouncil.com.au or phone 1300 780 113.

The Cancer Council New South Wales153 Dowling StreetWoolloomooloo NSW 2011

Cancer Helpline: 13 11 20Telephone: (02) 9334 1900Facsimile: (02) 9334 1741Email: [email protected]: www.cancercouncil.com.au

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Introduction This booklet has been written to help you understand moreabout brain and spinal cord tumours. Many people feelunderstandably shocked and upset when they are told thatthey have a tumour. This booklet is intended to help youunderstand the diagnosis and treatment of the disease. Wealso include information about support services.

You may be reading this booklet because your child has beendiagnosed with a brain tumour. We cannot advise you aboutthe best treatment for your child or for you. You need todiscuss this with your doctors. However, we hope this bookletwill answer some of your questions and help you think aboutthe questions you want to ask your doctors.

You do not need to read it from cover to cover – just read theparts that are useful to you.

If you find this booklet helpful, you may like to pass it on toyour family and friends, who may also find it useful.

Some medical terms that may be unfamiliar are explained inthe glossary.

Introduction 1

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ContentsThe brain and spinal cord . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

What is a brain or spinal cord tumour? . . . . . . . . . . . . . 5

Benign tumours . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Malignant tumours . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Grades of tumour . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7How common are they? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Causes of brain tumours . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7What are the symptoms? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Seizures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Which health professionals will I see? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10CT scan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11MRI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Further tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12Prognosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Radiotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Alternative and complementary therapies . . . . . . . . . . . . . . . . . . . . . . . . . 18Steroid therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Anti-convulsant medication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20After treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

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Making treatment decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Talking with doctors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24Talking with others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24A second opinion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25Taking part in a clinical trial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

If your child has a brain tumour . . . . . . . . . . . . . . . . . . . . . . . . 27

Effects of treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27Prognosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27What do I tell my child? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Try to keep things normal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Who is available to help? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Seeking support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Practical and financial help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30Healthy eating and exercise . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31Emotional support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32Caring for someone with a brain tumour . . . . . . . . . . . . . . . . . . . . . . . . . . 34Information on the Internet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

Information checklist . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36

Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

Cancer Council stores, NSW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

Regional offices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Contents 3

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The brain and spinal cordThe brain and spinal cord, which are made mostly of nervecells called neurones, form the central nervous system.Neurones transmit messages around the body, which allow usto move when we want to. The brain also controls bodyfunctions we are barely aware of, such as breathing, bloodcirculation, maintaining body temperature, production ofhormones, digestion of food, and making the heart beat fasterwhen we exercise.

The brain also interprets information from our senses andcontrols our thoughts, intelligence, memory and emotions.The largest part of the brain is called the cerebrum, which ismade up of two hemispheres.

The spinal cord, which is encased in the spinal column orbackbone, consists of nerve cells and bundles of nerves thatconnect the brain with all parts of the body. The spinal cordextends from the base of the brain to the base of the spinalcolumn.

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Scalp

Skull

Brain

Spinal column (bone)

Spinal cord

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What is a brain or spinal cord tumour? 5

What is a brain or spinalcord tumour?Our bodies are constantly making new cells to enable us togrow and to replace worn-out cells. Normally, cells grow andmultiply in an orderly way, but sometimes something goeswrong with this process and cells grow in an uncontrolledway. These cells may grow into a mass called a tumour.

Sometimes cells break away from the original (primary) tumourand spread to other organs. When these cells reach a new site,they may continue to grow and form another tumour there.This is called a secondary cancer or metastasis. Primary braintumours rarely spread to other parts of the body, but they canspread to other parts of the brain or spinal cord. Primarycancers in other parts of the body can spread to cause tumoursin the brain.

There are more than 40major types of braintumours, which are groupedinto two main types: benignand malignant.

Benign tumoursMost benign tumours are made up of slow-growing cells andare unlikely to spread. Common types of benign braintumours are meningiomas, neuromas, pituitary tumours,cranio-pharyngiomas and juvenile pilocytic astrocytomas.

The difference between benignand malignant is not as clearcut with brain tumours as it iswith other types of tumours.

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Malignant tumoursMalignant tumours are cancerous and able to spread into otherparts of the brain or spinal cord. However, sometimes the word‘malignant’ is also used to describe tumours that don’t spreadto other areas because they are made up of benign cells. Thesetumours are still life threatening because they grow large andcause problems by pressing on the surrounding brain tissue.

Malignant tumours vary widely in how they grow and respondto treatment. In some malignant tumours, the cells are confinedto a specific area. In other tumours, malignant cells are alsofound in tissue around the tumour.

Malignant brain tumours are usually named after the cell type from which they arise. They include astrocytomas,oligodendrogliomas, ependymomas and mixed gliomas.

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Hydrocephalus

The brain has four cavities filled with fluid, which flowsthrough narrow passages between the cavities and thesurface of the brain. Sometimes a brain tumour can blockthis flow. When this happens, fluid can build up, puttingpressure on the brain. This is called hydrocephalus and itis common in children with brain tumours.

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What is a brain or spinal cord tumour? 7

Grades of tumourBrain tumours are usually graded on a scale of I to IV basedon how quickly they are growing, as well as their ability toinvade nearby tissue. • Grades I and II are the slowest growing tumours and are

also called low-grade tumours. • Grade III tumours grow at a moderate rate. • Grade IV are the fastest growing tumours.

How common are they?In NSW every year malignant brain tumours are diagnosed in about 450 people, and malignant spinal tumours in about30 people.

Causes of brain tumoursThe causes of brain tumours are not known. Doctors canrarely explain why one person gets a brain tumour andanother does not.

However, it is known that brain tumours are not contagious, so no-one can catch the disease from someone else. Researchersaround the world are investigating the possible causes.

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What are the symptoms?As a tumour grows inside the skull it presses on the surroundingbrain tissue, creating pressure. Benign and malignant tumourscan cause the brain to swell. Symptoms vary, depending onwhat part of the brain a tumour presses on. Sometimes, when a tumour develops slowly, the symptoms develop so graduallythat they are hardly noticed.

Symptoms can include: • headaches• nausea and vomiting • difficulty speaking or remembering words• disturbed vision, hearing, smell or taste• weakness or paralysis in parts of the body• loss of balance• general irritability, drowsiness or a change in personality.

SeizuresA brain tumour may cause seizures (also known as fits orconvulsions) by irritating the nerve cells in the brain. Seizuresmay simply be a loss of consciousness for a few seconds, orthey may involve muscle spasms or abnormal movements forhalf a minute or more.

There are two main types of seizure:• Partial – involves one half of the brain. These often cause

twitching, jerking, tingling or numbness, or other sensationslike a strange smell or taste, or deja-vu. Sometimes theycause loss of consciousness.

• Generalised or grand mal – involves both sides of the brain. These cause muscle twitching or jerking and loss ofconsciousness.

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What is a brain or spinal cord tumour? 9

Symptoms of spinal cord tumoursA tumour pressing on the spinal cord may stop the flow ofmessages along the nerves between the brain and body. Painin the back is a common symptom, as the tumour presses onthe spinal cord in its narrow space within the spinal column.Most back pain, however, is due to other spinal problems.Loss of feeling, muscle weakness and loss of movement in legsand arms may occur if a tumour is present.

If you are with someone who has a seizure

Don’t try to restrain them or put anything in their mouth,just try to clear anything from around them that they mighthurt themselves on.

If they are unconscious, lie them on their side.

Most seizures last two or three minutes. Call an ambulanceif the seizure lasts more than five minutes, if they haveanother fit straight after the first, if they injure themselves orare having trouble breathing.

People are often confused after a seizure. Explain to themwhat has happened and find a place where they can restfor a few minutes.

Further seizures can often be prevented by medicationcalled anti-convulsants or anti-epileptics (see page 20).

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DiagnosisYour doctor will take a detailed history of your symptomsand examine you thoroughly. You may be referred for acomputerised tomography (CT) scan or magnetic resonanceimaging (MRI) and then to a neurologist or neurosurgeon.

The specialist will check how different parts of your brain are working. This may include checking your reflexes (forexample, your knee jerks), the strength in the muscles of yourarms and legs, and your ability to feel pin pricks. You may beasked to do some mental exercises, such as simple arithmetic.

The doctor may look into your eyes, using an instrumentcalled an ophthalmoscope, to see the end of your optic nerve.

Which health professionals will I see?Your GP will order initial tests and refer you to a specialist ifneeded. The health professionals who may care for you include:• neurosurgeon and neurologist: diagnose and treat people

with brain and spinal cord tumours • radiation oncologist: prescribes and co-ordinates the course

of radiotherapy • medical oncologist: prescribes and co-ordinates the course

of chemotherapy• dietitian: recommends an eating plan to follow while you

are in treatment and recovery• nurses: assist and support you through all stages of your

treatment• research co-ordinator or clinical care co-ordinator: advises

you on support services and clinical trials • social worker, physiotherapist and occupational therapist:

advise you on support services and help you resume normalactivities.

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Diagnosis 11

CT scan A CT scan is a special type of x-ray, which gives a three-dimensional picture of the organs and other structures(including any tumours) in your body. You will be asked tolie flat on a table while the CT scanner, which is large andround like a doughnut, rotates around you. Most people areable to go home as soon as their scan is over. It usually takesabout 30 to 40 minutes to complete this painless test.

To make the pictures that thescanner takes clearer, you maydrink, or have injected, a dye orcontrast fluid. This will meanthat you do not eat or drink forabout four hours before thescan. The dye injection cancause a burning sensation.

MRIAn MRI uses magnetism to build up a series of clear and detailedpictures. An MRI is painless and the magnetism is harmless. Youwill have to lie very still on a couch inside a metal cylinder, whichis open at both ends.

The machine is noisy and has been described by some peopleas like putting your head inside a washing machine, but youwill be given ear plugs. The test may take up to an hour.

The cylinder makes some people feel claustrophobic, but youmay be able to take someone into the room with you to keepyou company. You will be given a buzzer so the technician canstop the machine, and talk to you if you feel unwell or worried.

The results of a CT scan orMRI are not usually availablestraight away. They need tobe checked by a specialistcalled a radiologist. Yourdoctor will explain theradiologist’s report to you.

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Further testsOther tests that are sometimes used later are:• magnetic resonance spectroscopy (MRS)• positron emission tomography (PET)• single photon emission computerised tomography (SPECT)• lumbar puncture (also known as a spinal tap).

If your doctor recommends any other tests, ask him or her toexplain the tests. Understanding what is in store can help youfeel less worried before the test.

PrognosisPrognosis means the expected outcome of a disease. You willneed to discuss your prognosis with your doctor, but it is notpossible for any doctor to be precise about the prognosis.

The prognosis for tumours of the brain and spinal cord varies.It depends on your age, the type of tumour you have, howmuch of the tumour can be removed, and how well it respondsto treatment.

If you have a benign tumour that is completely removed, cureis likely.

The rate of growth and spread of malignant tumours alsovaries. Some types of malignant tumour, such as glioblastoma,grow and spread rapidly while others develop slowly over anumber of years. Response to treatment also varies a lot.

After treatment for a brain tumour, some people appear to becured and may live for many years. However, brain tumourscan recur. If a cure is not possible, treatment can often relievesymptoms for several years.

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Treatment 13

TreatmentTumours of the brain or spinal cord may be treated withsurgery, radiotherapy, chemotherapy and steroid therapy.These treatments may be used alone or in combination.Prompt treatment may prevent or lessen the effects of thetumour.

Your specialist will discuss the best treatment for your situationwith you.

The choice of treatment will depend on:• the tumour: its type, size and location • your age, medical history and general state of health.

The aim of treatment is:• to remove the tumour• or, if it cannot be removed, to slow the tumour’s growth

and relieve symptoms by shrinking the tumour and anyswelling around it.

If your doctor suggests you have more than one type oftreatment, this does not mean that your disease is worse orbetter than the disease of somebody who has only one type oftreatment. Each person is different and treatment needs to beplanned individually.

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SurgerySome tumours can be removed completely by surgery. If atumour is more spread out, or if it cannot be removedwithout damaging other important parts of the brain, thesurgeon may be able to remove part of the tumour. This willimprove your symptoms by reducing the pressure on the restof the brain. Sometimes tumours cannot be operated onbecause it would be too dangerous.

Whether surgery removes all or only part of the tumour, itoften improves your condition and lets you lead an active lifefor some time.

The operation to treat a brain tumour is called a craniotomy.Some of your hair will be shaved off. The surgeon cuts andmoves aside the skin, then removes a piece of skull above thetumour. The tumour is removed, the piece of skull replaced,and the skin stitched back in place.

ShuntsIf fluid build-up in the brain (hydrocephalus) is a problem, thesurgeon may put in a small permanent tube, called a shunt,just beneath the skin. The shunt will take the extra fluid fromthe brain and drain it into the abdomen. Sometimes, ifhydrocephalus has made a person very ill, a shunt may be putin first to relieve the symptoms, and surgery for the braintumour may be done a week or two later.

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Treatment 15

BiopsyIn some cases, the surgeon will only do a biopsy. Sometimesthis is done with computer guidance, through a small holemade in the skull. A tiny piece of tumour is removedand looked at under themicroscope, to see what typeof tumour you have. Thishelps the doctors to decide onfurther treatment.

After the operationA nurse will watch you closely for the first 12 hours or soafter the operation. Your head may be bandaged for the firstday, and a small tube may be placed near the wound to drainany excess blood from the operation site into a bottle.

Your face and eyes may be swollen after the operation, butthe swelling should go down within about a week. You mightalso have a black eye, but this is not usually painful. You mayneed to wear pressure stockings while you are resting inhospital, to prevent blood clots in your legs. The length ofyour hospital stay will depend on the extent of the operationand on any treatment you may need afterwards.

Surgery for a spinal cord tumourThe main surgery for a spinal cord tumour is a laminectomy.The surgeon cuts into the spinal column and removes thetumour affecting the spinal cord.

After the spinal operation, the nurses will regularly check yourpulse, blood pressure, temperature and dressing, and themovement and sensation in your legs. You may need to rest flatin bed for three to five days, to allow the wound to heal. Yourdoctor will tell you when you can start normal activities again.

Results from a biopsy cantake between two days anda month to come throughbecause a pathologist needsto check it carefully.

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RadiotherapyRadiotherapy uses x-rays to kill cancer cells or injure them sothey cannot multiply, while doing as little harm as possible tothe surrounding healthy tissues. In adults, radiotherapy isoften used after surgery for malignant tumours. Treatment isusually given over several weeks, but the length ofradiotherapy will depend on the type and size of the tumourthat you have.

The radiation therapist will make several marks on your skinto make sure that exactly the same area is being treated eachtime. A personalised plastic face mask is often worn duringtreatment to assist the targeting of the radiotherapy.

Side effects Common side effects of radiotherapy are tiredness, whichmay last a month or so after radiotherapy, and nausea, which can be helped by medication. Mild headaches are alsocommon. Radiotherapy to your head may also cause any hair in the treatment area to fall out. This hair usually growsback slowly, though it may not be as thick as before and itmay change colour.

Scalp and skin in the treatment area may also become red,dry and tender.

Most side effects are short term, but ask your doctor if youare likely to have any long-term side effects.

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Treatment 17

Chemotherapy Chemotherapy is the use of anti-cancer (cytotoxic) drugs todamage or destroy cancer cells. The drugs stop the cancer cellsfrom growing and reproducing themselves.

If you have chemotherapy for your tumour, the doctor willdecide on the dose and frequency of the treatment. Eachtreatment will usually be followed by a rest period of a fewweeks to allow your body to recover from any side effects.The number of courses given will depend on the type oftumour and how well it is responding to the drugs.

You may have chemotherapyin hospital over a few daysthrough an intravenous drip, or you may havechemotherapy in tablet form,as an outpatient.

The Cancer Council’s booklets onchemotherapy and radiotherapydiscuss ways of managing sideeffects. Call 13 11 20 for a copy.

Tips for radiotherapy

✓ Do not use any creams, lotions or soaps without talkingto your doctor or radiation therapist first.

✓ Check with your doctor or radiation therapist beforeshaving any affected skin.

✓ Keep the affected skin out of the sun, as it is easily burnt.

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Side effects Some drugs used in chemotherapy can cause side effects. Theymay include feeling sick, mouth sores, tiredness, and thinningor loss of hair from your body and head. Ask your doctorwhat side effects to expect from the treatment, as these willvary depending on the type of chemotherapy you have.

The side effects are temporary and there are ways to preventor reduce them. Tell your doctor or nurse of any side effectsyou experience. They may prescribe a break in yourtreatment, or change the kind of treatment you are having.Any nausea can be controlled with medication.

Don’t use aspirin or any other pain-killer or medicine, unlessthe doctor says you can. These can affect how chemotherapyworks in your body.

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Alternative and complementarytherapies

Many people with brain tumours will considercomplementary and alternative therapies. Some of theinformation about these therapies on the Internet is notreliable, but a good source of information is the CancerHelpline and the National Cancer Institute’s website (seepage 35).

Some herbs, supplements and vitamins can interfere withyour conventional treatment, so let your doctor knowabout any other therapies you are using.

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Treatment 19

Steroid therapy Steroid drugs (usually dexamethasone) are used to reduce theswelling that often surrounds brain tumours before or aftersurgery or radiotherapy. These are different steroids to thosetalked about in sports drug scandals. Steroids can be used atmany stages of treatment, for varying lengths of time. Formore information on steroid treatment, call the Sydney Neuro-Oncology Group on (02) 8425 3369 or see their website (seepage 35).

Side effects The dose of steroids given will be kept as low as possible assteroids may cause the following side effects if taken over along period of time.

• Increased appetite and weight gain: You may put on weightwithin a few weeks, especially on your face (sometimescalled a moon face), waist and shoulders. Steroids oftenproduce a feeling of well-being, and may also make youfeel like eating more, so have some healthy snacks handy.Some people also get acne and water retention.

• Steroid-induced diabetes: The level of sugar in your bloodmay increase, and needing to urinate more often can be awarning sign. You may need to do a simple daily test tocheck for sugar in your urine or blood. Your doctor ornurse will show you how to do this.

• Muscular weakness: This can be a problem, especially ifyour tumour is also causing weakness. This is a rare sideeffect and is more common with high-dose, long-termsteroid treatments. Tell your nurse or doctor if you haveany muscle weakness.

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Most of these side effects are temporary and will graduallydisappear as your steroid dose is reduced. Steroid drugs oftenmake people feel emotionally uplifted and it is common tofeel depressed for a while after you finish your dose.

Do not stop taking steroidssuddenly, as this can bedangerous. When it is time tostop taking steroids yourdoctor will advise you how togradually reduce your dose.

Anti-convulsant medicationAnti-convulsants are used to prevent seizures or fits. With someanti-convulsants you need regular blood tests to make sure thedose is right. You may need blood tests regularly at first andthen every six to 12 months. You may also have a liver functiontest to make sure there are no abnormal changes.

Side effects Everyone reacts differently to anti-convulsants, so talk toyour doctor about how they are going for you. Possible sideeffects and remedies include:• Swelling of gums – use a soft tooth brush. • Tiredness – take regular rest periods. • Insomnia or feeling on edge – try relaxation or meditation. • Poor co-ordination, feeling off balance and concentration

problems – take time doing tasks, ask for help.• Rash, or nausea and vomiting, constipation or tremors –

seek medical advice.

20 The Cancer Council New South Wales

It is a good idea to carry a listof the medications you use andthe dose, in case you becomeill and need medical treatment.

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Treatment 21

After treatmentAfter treatment, you will need regular checkups, often involvingan MRI. To begin with, these checkups occur several times ayear, and then usually only yearly. Checkups are important tomake sure the tumour has not come back and that a new onehas not developed.

It is natural to feel anxious about the tumour coming back.Talking over your concerns with your family and your owndoctor can be helpful. The regular checkups will reassure youthat all is well. If there are any problems, they can be foundearly, when treatment is most likely to work.

It can take time before you feel reassured by checkups. Youwill need to rebuild confidence in your body and in the future.

You may find that you need reassurance from your specialist.Ask lots of questions if you want to, and try to have all yourquestions answered. Remember that you are not alone and thatyour feelings are normal. Be patient with yourself.

Tips for taking anti-convulsants

✓ Keep a diary and note when to take the medication andwhen blood tests will be done.

✓ Have regular blood tests to monitor your blood level.✓ Discuss your care plan with your doctor.✓ Do not reduce your medication or take it in different

doses without medical advice.✓ Limit your alcohol intake – anti-convulsants interact with

alcohol. One glass of wine or beer is fine.

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RehabilitationDepending on their location, brain tumours can affect some ofthe normal functions of the brain, such as speech, personality,movement, balance or memory. If you have problems in theseareas, you may need the help and advice of other members of the health care team, including the speech pathologist,physiotherapist and occupational therapist. This help can startin hospital and people who need help for some time cancontinue their therapy as outpatients.

Palliative careThe palliative care team works to relieve symptoms caused byyour cancer, such as pain, nausea or constipation, at any stageof advanced disease. Palliative care specialists are doctors whoare experts in pain and symptom control. The palliative careteam includes doctors, nurses, physiotherapists, occupationaltherapists and social workers.

Your hospital doctor or nurse can put you in touch with apalliative care team for treatment in hospital, and your GPcan refer you to a community palliative care team fortreatment at home. Palliative care nurses in the communitymonitor you at home to check for any distress, whether it bephysical, emotional or psychological. They are also able toorganise access to equipment for home. An occupationaltherapist and physiotherapist can organise access to other aidsfor around the home.

When your symptoms are controlled and your supportsystems are in place, the palliative care team will usually stepback and help you later if needed. For further information,contact the Cancer Helpline.

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Making treatment decisions 23

Making treatment decisionsSometimes it is difficult to decide on the right treatment foryou. You may feel everything is happening so fast you don’thave time to think things through.

You need to make sure you understand enough about yourillness, the treatment and side effects to make your owndecisions.

You always have the right to find out what a suggestedtreatment means for you, and the right to accept or refuse it.

If you are offered a choice of treatments, you will need toweigh the advantages and disadvantages of each treatment. Ifonly one type of treatment is recommended, ask your doctorto explain why other treatment choices have not been offered.

Some people will choose treatment, even if it only offers asmall chance of cure. Others want to make sure the benefitsof treatment outweigh any side effects. Some may choose notto have treatment but to have symptoms managed tomaintain the best possible quality of life.

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Talking with doctorsWhen your doctor first tells you that you have a brain orspinal cord tumour, it is obviously very stressful and you may not remember very much. It is often difficult to takeeverything in, and you may need to ask the same questionsmore than once. Before you see the doctor, it may help towrite down your questions. A list of questions to ask yourdoctor is at the end of this booklet.

Taking notes during the session or tape-recording thediscussion can also help. Many people like to have a familymember or friend go with them, to take part in thediscussion, take notes or simply listen.

I took a friend with me for support to thesecond appointment. It was like a dream whereI just said 'yes, yes, yes' and luckily my friendwrote down all the information.

Talking with othersOnce you have discussed treatment options with your doctor,you may want to talk them over with family or friends, withnursing staff, the hospital social worker or chaplain, a pastoralcare worker, your own religious or spiritual adviser, a cancersupport group (see page 32) or the Cancer Helpline. Talking itover can help sort out the right course of action for you.

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Making treatment decisions 25

A second opinionYou may want to ask for a second opinion from anotherspecialist. This is understandable and can be a valuable partof your decision-making process. Your specialist or localdoctor can refer you to another specialist and you can ask foryour results to be sent to the second-opinion doctor.

You can ask for a second opinion even if you have alreadystarted treatment or still want to be treated by your first doctor.

Taking part in a clinical trialYour doctor may suggest you consider taking part in aclinical trial. Clinical trials are a vital part of the search tofind better treatments for cancer. Doctors conduct clinicaltrials to test new or modified treatments and see if they arebetter than current treatments.

Many people all over the world have taken part in clinicaltrials that have resulted in improvements to cancer treatment.However, the decision to take part in a clinical trial is alwaysyours.

If your doctor asks you to take part in a clinical trial, makesure you understand the reasons for the trial and what itmeans for you. Before deciding whether or not to join thetrial, you may wish to ask your doctor:• What treatments are being tested and why?• What tests are involved?• What are the possible risks or side effects?• How long will the trial last?• Will I need to go into hospital for treatment?• What will I do if problems occur while I am in the trial?

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26 The Cancer Council New South Wales

If you are unsure about joining the trial, ask for a secondopinion from an independent specialist.

If you decide to join a randomised clinical trial, you will begiven either the best existing treatment or a promising newtreatment. You will be chosen at random to receive onetreatment or the other.

Being in a trial gives you important rights. You have the rightto withdraw at any time. Doing so will not jeopardise yourtreatment for cancer.

For more information about clinical trials, call the CancerHelpline on 13 11 20 for a free copy of UnderstandingClinical Trials.

Research into causes and treatment

Research is being done in Australia and elsewhere toidentify the causes of brain and spinal cord tumours, tofind better treatments and evaluate current treatments.

Experimental treatments include refinements of existingtreatments, like computer-guided radiotherapy. Others arenew treatments, like gene therapy: using normal genes totreat disease caused by abnormal genes.

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Making treatment decisions 27

If your child has a braintumourAll types of brain tumour can occur in children. While thesymptoms, diagnosis and treatment of brain tumours inchildren are much the same as in adults, children’s braintumours pose a number of different problems.

Effects of treatment In children, radiotherapy to the head is given in lower dosesthan is used for adults because high-dose therapy can slow achild’s intellectual development. It is used rarely for childrenunder the age of two or three years for this reason.

For some types of childhood tumours, it may be necessary togive radiotherapy to the spine as well as the head. This canslow down bone growth in the spine, and the child may notgrow as tall as they would have otherwise. Radiotherapy canalso slow a child’s growth by affecting the pituitary gland inthe brain, which produces hormones that control growth.These children may need hormone therapy to help them togrow and develop normally.

PrognosisSome tumours are simple to deal with and easily cured, whileothers are much more difficult to treat and there is less chanceof a cure. While a significant number of children will recovercompletely, a proportion of children whose tumours are curedor controlled for many years will be left with disabilities. Theserange from mild learning or behaviour problems to severephysical or intellectual disability.

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What do I tell my child? It is quite natural to want to protect your child from the newsof something as threatening as a brain tumour, and someparents will find it difficult to talk openly to their child aboutthe tumour. Children, however, quickly pick up that somethingis seriously wrong, whether or not they are told. If you cantalk openly and honestly about the brain tumour, it will helpyour child to be less anxious and to feel a little more incontrol of the situation. Your openness and calm confidencecan help to reassure your child.

Try to keep things normalOne of your child’s main needs will be for as many things aspossible to stay normal and consistent. It is important tocontinue to show your love and support. It may help to keeprules and discipline as normal as possible because althoughyou may be tempted to spoil your child or relax your usualdiscipline, this can lead to confusion in the long run.

Who is available to help? The hospital staff who work with your child will often bepeople who specialise in working with children. Some hospitalsand cancer treatment centres employ play therapists who canhelp children work through their fears and feelings and copewith treatment.

A number of organisations and parents’ support groups offerpractical and emotional support for families and children,camps for children and a number of other services. Ask at yourhospital, or ring the Cancer Helpline for further information.

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Seeking support 29

Seeking supportWhen you are first diagnosed with a brain or spinal cordtumour, you may feel a variety of extreme emotions, such asfear, sadness, depression, anger or frustration. It may behelpful to talk about your feelings with your partner, familymembers or friends, or with a hospital counsellor, socialworker, psychologist or your religious or spiritual adviser.

Sometimes you may find that your friends and family do notknow what to say to you: they may have difficulty with theirfeelings as well.

Some people may feel so uncomfortable that they avoid you.They may expect you to ‘lead the way’ and tell them whatyou need. This can be hard to handle and can make you feelvery lonely.

You may feel able toapproach your friendsdirectly and tell themwhat you need. You mayprefer to ask a closefamily member or afriend to talk with otherpeople for you.

Reading The CancerCouncil’s bookletEmotions and Cancermay also help at thiscritical time.

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Practical and financial helpA serious illness often causes practical and financialdifficulties. You don’t need to face these alone.

Many services are available to help:• Financial assistance, through benefits and pensions, can help

pay for the cost of prescription medicines and for travel tomedical appointments.

• Home nursing care is available through community nursingservices, or through the local palliative care service.

• Meals on Wheels, home care services and aids andappliances can make life easier.

• Contact the hospital social worker, occupational therapistor physiotherapist, or the Cancer Helpline for informationon these services.

It is important to ask for help – whether it bepractical, financial or spiritual.

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Seeking support 31

Healthy eating and exerciseA balanced, nutritious diet will help you to keep as well aspossible and cope with the brain tumour and any side effectsof treatment. Depending on the kind of treatment you havehad, you may have special dietary needs. A dietitian can helpto plan the best foods for your situation – ones that you findtempting, easy to eat and nutritious.

You will probably find it helpful tostay active and to exerciseregularly if you can. The amountand type of exercise you do willdepend on what you are used toand how well you feel.

Discuss with your doctor what islikely to be best for you.

Relaxation techniquesSome people find relaxation or meditation helps them to feelbetter. The hospital social worker or nurse will know whetherthe hospital runs any programs, or may be able to advise youon local community programs. Your local community healthcentre may also be able to help.

The Cancer Council’sbooklet on nutrition andcancer has practical tipson eating well duringand after cancertreatment. Call 13 11 20for a copy.

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32 The Cancer Council New South Wales

Emotional support

Living with Cancer Education ProgramIf you want to find out more about cancer and how to copewith it, you may find The Cancer Council’s Living with CancerEducation Program helpful. The program runs for about twohours a week over eight weeks. Groups are small, with plentyof time for discussion. Courses are held frequently at hospitalsand community organisations throughout New South Wales.Contact your hospital social worker or the Cancer Helpline formore information.

Support groups Cancer support groups offer mutual support and informationto people with cancer and, often, to their families. It can help to talk with others who have gone through the sameexperience. Support groups can also offer many practicalsuggestions and ways of coping. Your hospital may runspecial cancer support groups: check with your doctor, nurseor social worker, or contact the Cancer Helpline.

Because of the small number of people with brain tumours, ithas been difficult to maintain support groups specifically forbrain tumours, although there are several in New South Wales.Electronic discussion groups on the Internet are useful forisolated people.

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Seeking support 33

The Cancer Helpline

The Cancer Helpline is a service of The Cancer CouncilNSW. It is a telephone information and support service forpeople affected by cancer. It is a confidential servicewhere you can talk about your concerns and needs withspecialist cancer nurses. The nurses can send you writteninformation and put you in touch with appropriate servicesin your own area.

You can call the Cancer Helpline on 13 11 20, Monday toFriday, 9am to 5pm, for the cost of a local call. The tele-typewriter (TTY) number for deaf or hearing-impairedpeople is (02) 9334 1865.

As well as English, the Helpline is offered in the followinglanguages:Cantonese and Mandarin .................................................... 1300 300 935Greek ......................................................................................................... 1300 301 449Italian .......................................................................................................... 1300 301 431Arabic ......................................................................................................... 1300 301 625

To access the Cancer Helpline in languages not on this list,call the Translating and Interpreting Service on 13 14 50.

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Caring for someone with a brain tumourCaring for someone with a brain tumour can be verystressful, particularly when it is someone you are close to.Give yourself some time out, and share your worries andconcerns with someone outside.

Cancer support group membership is generally open to patientsand carers. A support group can offer the chance to shareexperiences and ways of coping for all the family. No-one hasto cope alone.

The Carers Association also offers support and informationfor carers. Call 1800 242 636.

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Seeking support 35

Information on the Internet

The Internet can be a useful source of information,although not all websites are reliable. The websites listedbelow are good sources of reliable information.

The Cancer Council NSW ............ www.cancercouncil.com.au

The Cancer Council Australia .......................... www.cancer.org.au

The Sydney Neuro-Oncology Group ............ www.snog.org.au

CancerBACUP ................................................. www.cancerbacup.org.uk

National Cancer Institute........................................................... www.cancer.gov/cancer_information

American Cancer Society ............................................ www.cancer.org

American Brain Tumour Association ..................... www.abta.org

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36 The Cancer Council New South Wales

Information checklistYou may find the following checklist helpful when thinkingabout the questions you want to ask your doctor. If there areanswers you don’t understand, it is OK to ask your doctor toexplain again.

What type of tumour do I have?

What is my prognosis?

What treatment do you advise and why?

Will my treatment be performed by a doctor whospecialises in brain tumours?

Are there other treatment choices for me? If not, why not?

Are there any clinical trials of new treatments that I shouldknow about?

What are the risks and possible side effects of eachtreatment?

Will I have to stay in hospital, or will I be treated as anoutpatient?

How long will the treatment take? How much will itaffect what I can do? How much will it cost?

Will I have a lot of pain with the treatment? What willbe done about this?

If I need further treatment, what will it be like and whenwill it begin?

When will I have my checkups and what will they involve?

I would like to have a second opinion. Can you refer meto someone else?

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Glossary 37

Glossaryanaesthetic

A drug that stops a person feeling pain during a medicalprocedure. A local anaesthetic numbs part of the body; ageneral anaesthetic puts a person to sleep for a period oftime.

benign

Not cancerous. Benign cells are not able to spread likecancer cells.

biopsy

The removal of a small sample of tissue from the body, forexamination under a microscope, to help diagnose a disease.

central nervous system

The brain and the spinal cord.

cerebrospinal fluid

The clear, watery fluid that surrounds and protects thebrain and the spinal cord.

chemotherapy

The use of cytotoxic drugs, which kill or slow growth, totreat cancer.

craniotomy

The surgical removal of a portion of the skull.

CT (computerised tomography) scan

The technique that uses x-rays to build a picture of the body.

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38 The Cancer Council New South Wales

hydrocephalus

Build-up of cerebrospinal fluid in the brain.

magnetic resonance imaging (MRI)

Similar to a CT scan, but this test uses magnetism insteadof x-rays to build up cross-sectional pictures of the body.

malignant

Cancerous. Malignant cells can spread and can eventuallycause death if they cannot be treated.

metastasis

A secondary tumour that develops in a part of the bodyseparate from the original (primary) tumour.

neurologist

A doctor who specialises in the structure, functioning anddiseases of the nervous system (including the brain, spinalcord and peripheral nerves).

neurone

A cell specialised to transmit electrical nerve impulses,thereby carrying information from one part of the body tothe other.

neurosurgeon

A surgeon who specialises in operations on the nervoussystem.

primary cancer

The original cancer. Cells from the primary cancer maybreak away and be carried to other parts of the body,where secondary cancers may form.

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Glossary 39

prognosis

The likely outcome of a person’s disease.

radiation oncologist

A doctor who specialises in treating cancer withradiotherapy.

radiation therapist

A health professional (not a medical doctor) whoadministers radiotherapy.

radiotherapy

The use of radiation, usually x-rays or gamma rays, to killtumour cells or injure them so they cannot grow or multiply.

secondary cancer

Also called metastasis. A tumour that has spread from theoriginal site to another part of the body.

spinal column

The bone surrounding the spinal cord.

spinal cord

The portion of the central nervous system enclosed in thespinal column, consisting of nerve cells and bundles ofnerves connecting all parts of the body with the brain.

steroids

Hormones used in the treatment of disease.

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40 The Cancer Council New South Wales

Cancer Council stores, NSW Chatswood

Westfield ShoppingtownVictoria Avenue Chatswood 2067Ph: (02) 9413 2046

Hornsby

Westfield ShoppingtownPacific Highway Hornsby 2077Ph: (02) 9987 0662

Kotara

Garden CityCnr Park Avenue andNorthcott DriveKotara 2289Ph: (02) 4965 5171

Miranda

Westfield ShoppingtownThe Kingsway Miranda 2228Ph: (02) 9525 9209

Shellharbour

Shellharbour SquareLake Entrance Road Blackbutt 2529Ph: (02) 4297 4777

Sydney – City

Westfield CentrepointCastlereagh Street entranceSydney 2000Ph: (02) 9223 9430

Warringah Mall

Cnr Condamine Street andOld Pittwater RoadBrookvale 2100 Ph: (02) 9939 2668

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Regional offices 41

Regional officesCentral Coast Region

127 Erina StreetGosford 2250Ph: (02) 4325 5444

Far North Coast Region

120 Tamar StreetBallina 2478Ph: (02) 6681 1933

Hunter Region

22 Lambton RoadBroadmeadow 2292Ph: (02) 4961 0988

Mid North Coast Region

121 High StreetCoffs Harbour 2450Ph: (02) 6651 5732

North West Region

Shop 2, 218 Peel StreetTamworth 2340Ph: (02) 6766 1164

South West Region

40 Morrow StreetWagga Wagga 2650Ph: (02) 6921 7760

Southern Region

1 Lowden SquareWollongong 2500Ph: (02) 4225 3660

Sydney Metropolitan

Region

and Head Office153 Dowling StreetWoolloomooloo 2011(PO Box 572, Kings Cross 1340)Ph: (02) 9334 1900

Western Sydney Region

43 Hunter StreetParramatta 2150Ph: (02) 9687 1399

Western Region

84 Byng StreetOrange 2800Ph: (02) 6361 1333

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CC879 4911 71606 Date: 07/03

Cancer Helpline 13 11 20For support and information on cancer and cancer-related issues, call theCancer Helpline. This is a free and confidential service.

Cancer Helpline .................... 13 11 20 (cost of a local call)TTY ........................................ (02) 9334 1865 for deaf and hearing-impairedCantonese and Mandarin .... 1300 300 935Greek ..................................... 1300 301 449Italian ..................................... 1300 301 431Arabic .................................... 1300 301 625

For further information and details please visit our website:

www.cancercouncil.com.au