1. Initial investigation and referral
Your general practitioner (GP) will assess your symptoms (for example, unexplained morning headache, persistent new headaches) and if high grade glioma is suspected, you will be referred to a specialist for further testing within 24 hours.
Some people have sudden symptoms (for example a seizure), and go directly to the hospital’s emergency department. In this instance you will require urgent evaluation by a neurologist or neurosurgeon to assess the cause.
Your doctor (GP and/or specialist) should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support.
If high grade glioma is suspected, you will be referred to a neurosurgeon for further testing, if this has not already been done.
Tests you may have:
- Computed tomography (CT) scan: Computer technology and x-rays are used to create detailed images of the brain.
- Magnetic resonance imaging (MRI) scan: Magnetic fields and radio waves are used to take pictures of inside the body.
- Physical examination: Your doctor will conduct a number of physical tests to check your nervous system.
It can be helpful to bring a family member or friend with you to your appointments.
2. Diagnosis and staging
The specialist will discuss your test results with you and options for further testing. You should have a CT scan if you haven’t already. This is to find out whether cancer is present and, if it is, its stage of development and if it has spread.
In some cases, the neurosurgeon makes a small opening in the skull and inserts a needle to take a sample. In other cases, the neurosurgeon removes a larger part of the skull to get to the tumour. It is important that this procedure is performed by a neurosurgeon with experience in the treatment of brain tumours.
3. Further referral and testing
Some people have further tests such as an MRI scan, a PET scan or a biopsy.
It can also be helpful to contact cancer peer support groups and support groups for carers.
Here is a list of questions to ask your doctor.
To ensure you receive the best care, your specialist will arrange for a team of health professionals to review your test results and plan your treatment based on your preferences and needs.
The team will be made up of health professionals who have experience managing and supporting a person with high grade glioma. Your specialist will tell you when the team will be discussing your case.
Your team should discuss the different treatment options with you including the likely outcomes, expected timeframes, possible side effects, and the risks and benefits. Your doctor may also suggest you consider taking part in a clinical trial. You might want to ask for more time before deciding on your treatment.
Let your team know about any complementary therapies you are using or thinking about trying.
Some therapies may not be appropriate, depending on your medical treatment.
Treatment options for high grade glioma:
For the majority of people, these treatments are used at different stages to relieve various symptoms and help to improve quality of life.
Surgery is the most common treatment for people with high grade glioma. It is important that surgery is performed by a neurosurgeon with experience in the treatment of brain tumours and performs several operations every year.
Chemotherapy may be given to you after surgery in combination with radiation therapy and/or following radiation therapy.
Radiation therapy (also called radiotherapy) may be given to you with or without chemotherapy.
Medication, such as steroids or anticonvulsants (anti-seizure medication), may also be given to reduce symptoms.
High grade glioma is usually incurable but longer-term survivors do exist. As such, most people with high grade glioma have a palliative care team who work in collaboration with their neuro-oncology team to assist with symptom management. It is valuable to have a palliative care team who has experience with this disease to ensure that your physical and emotional needs are being met.
For more information about treatment and treatment side effects ask your doctor or visit our treatment section.
5. After treatment
After your primary treatment is completed, your doctor should provide you with a treatment summary that details the care you received, including:
- diagnostic tests performed and their results
- types of treatment used and when they were performed
- treatment plans from other health professionals
- support services provided to you.
The majority of patients will be discharged into the community and generally need to see a specialist for regular followup appointments.
You and your GP should receive a follow-up care plan that tells you about:
- the type of ongoing care that is best for you
- care plans for managing any side effects of treatment, should they occur
- how to get specialist medical help quickly if required.
If you need extra help after treatment, your GP or specialist can discuss your needs with you and refer you to appropriate health professionals and/or community organisations.
6. Living with cancer
Some people experience side effects (for example, tiredness) that continue beyond the end of treatment. Sometimes side effects don’t begin until months after treatment has finished. For more information about side effects ask your doctor.
Advance care plan:
Your doctor may discuss with you the option of developing an advance care plan. An advance care plan is a formal way of setting out your wishes for future medical care. For more information about advance care planning ask your doctor or visit advancecareplanning.org.au.
This type of treatment could be used at different stages to help you with pain relief, to reduce your symptoms or help improve your quality of life. For more information about palliative care ask your doctor or visit palliativecare.org.au.
7. Questions of cost
There can be cost implications at each stage of the cancer care pathway, including costs of treatment, accommodation and travel. There can be substantial out-of-pocket costs if you are having treatment in a private health service, even if you have private health insurance.
You can discuss these costs with your doctor and/or private health insurer for each type of treatment you may have. If you are experiencing financial difficulties due to your cancer treatment you can contact the social worker at your local hospital.
For more information visit costs of treatment.
For more information about accommodation and travel costs visit our support section.
8. Further support
High grade glioma support
For information about brain cancer or where to go for support call Cancer Council 13 11 20.
Specially trained staff can answer your questions about the effects of cancer, explain what will happen during treatment or link you to support groups and other community resources.
If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.
For support and advice for carers, call the Carers Association on 1800 242 636.
More support options
American Brain Tumor Association
Provide support and resources for brain tumour patients and caregivers
• Website: www.abta.org/
Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focussed on the post-treatment survivorship phase
• Telephone: +61 3 9656 5207
• Website: www.petermac.org/cancersurvivorship
National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au
beyondblue: the national depression initiative
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au
The Brain Foundation
A charity funding world-class research Australia-wide into neurological disorders, brain disease and brain injuries
• Website: www.brainfoundation.org.au
Cancer Voices Australia
Cancer Voices Australia is an alliance of cancer consumer organisations which works together on national issues for people affected by cancer
• Website: www.cancervoicesaustralia.org
NEMICS A common path: High grade glioma
Videos offering support and advice from people who have been through cancer.
• Visit: www.youtube.com/c/ACommonPathCancersupportandadvice
The Brain Tumour Alliance Australia
Information resources and support for newly diagnosed patients and their families.
• Telephone: 1800 857 221 (free call number for peer support)
• Website: www.btaa.org.au
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au
Care Search: Palliative Care Knowledge Network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au
Clinical versions of the optimal care pathways have been developed for clinicians and general practitioners here.