High-grade gliomaYour guide to best cancer care

It can be overwhelming after being told that you have or may have high-grade glioma (a type of brain cancer). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the brain cancer page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

For more information about melanoma, visit Cancer Council’s Understanding Brain Tumours booklet.

For more information and patient support, visit the Brain Tumour Alliance Australia page or the Cure Brain Cancer Foundation page.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your general practitioner (GP) should do a check-up to see if they can find what is making you feel unwell. They will ask you about any symptoms you might be having. For example, you might have headaches in the morning or that last all day.

If you have any sudden symptoms like a seizure you should go to a hospital straight away.

Initial tests you may have:

Referrals

If your GP has concerns, you will be referred to a specialist (neurosurgeon) at a public hospital or in private practice for more tests. Neurosurgeons are doctors who are highly trained in high-grade glioma.

You can bring a family member or friend with you to your appointments.

Timeframes

You should be referred to a specialist within 24 hours of your GP appointment. If you can’t get an appointment within this time, follow up with your GP.

The specialist will do more tests to see if you have high-grade glioma. This process of working out if you have a medical problem is called making a diagnosis.

You might have one test or a mix of tests:

You’ll undergo an MRI and CT scan if you haven’t already had one.

These tests will give the specialist more information about the glioma, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called grading, which helps to work out the best treatment for you.

Timeframes

Results should be available within three days from when you have the tests.

There are several ways to treat high-grade glioma. Your specialist will talk to you about your treatment options.

You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one treatment or a mix of treatments:

Surgery is where the cancer is cut out. It is the most common treatment for high-grade glioma.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It might be used alone but more commonly after surgery, and sometimes with chemotherapy.

Chemotherapy or drug therapy uses drugs to kill cancer cells or stop the cancer growing. It might be used alone but more commonly after surgery, or with radiation therapy.

Steroids and anticonvulsants are medicines to stop you from having seizures. They might be used to reduce your symptoms.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available.

Timeframes

Treatment should start immediately for most cases or within four weeks (if not urgent) of agreeing to your treatment plan.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page.

Recovery

Cancer treatment can cause a range of physical and emotional changes.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with side effects of treatment
• how to get help quickly if you think the cancer has returned or is worse

Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• late effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

It is very common for high-grade glioma to come back after treatment. Cancer can also appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.