Brain tumours


Life after a brain tumour

Follow-up appointments

After treatment ends, you will have regular appointments to monitor your health, manage any long-term side effects and check that the tumour hasn’t come back or spread. During these check-ups, you will usually have a physical examination and you may have blood tests, x-rays or MRI scans.

When a follow-up appointment or test is approaching, many people find that they think more about the tumour and may feel anxious. Talk to your treatment team or call Cancer Council on 13 11 20 if you are finding it hard to manage this anxiety. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems.

Your guide to best cancer care

A lot can happen in a hurry when you’re diagnosed with cancer. The Guide to Best Cancer Care for brain tumours (high grade glioma) can help you make sense of what should happen. It will help you with what questions to ask your health professionals to make sure you receive the best care at every step.

Read the guide to best cancer care for brain tumours

Recurrence

For some people, a brain or spinal cord tumour does come back or continues growing despite treatment. If the tumour returns, this is known as a recurrence.

Your treatment options will depend on your situation and the treatments you’ve already had, but may include targeted therapy. Targeted therapy drugs act on proteins found on cancer cells. Because these proteins are found in small amounts or not at all on normal cells, they tend to cause fewer side effects.

Bevacizumab is a targeted therapy drug that works by stopping cancer cells from developing new blood vessels and growing. It is given as a drip into a vein in repeated cycles. Other targeted therapy drugs are being developed. 

Question checklist

Asking your doctor questions will help you make an informed choice about your treatment and care. You may want to include some of the questions below in your own list:

Diagnosis

  • What type of brain or spinal cord tumour do I have?
  • Where is the tumour? How extensive is the tumour? What grade is it?
  • Are there clinical guidelines for this type of cancer?

Treatment

  • What treatment do you recommend? What is the aim of the treatment?
  • Are there other treatment choices for me? If not, why not?
  • What will happen if I don’t have treatment?
  • How long do I have to decide?
  • I’m thinking of getting a second opinion. Can you recommend anyone?
  • How long will treatment take? Will I have to stay in hospital?
  • Are there any out-of-pocket expenses not covered by Medicare or my private health cover? Can the costs be reduced if I can’t afford it?
  • How will we know if the treatment is working?
  • Are there any clinical trials or research studies I could join?

Side effects and after treatment

  • What are the risks and possible side effects of each treatment?
  • Will I have a lot of pain? What will be done about this?
  • Can I work, drive and do my normal activities while having treatment?
  • Will the treatment affect my sex life and fertility?
  • Should I change my diet or physical activity during or after treatment?
  • Are there any complementary therapies that might help me?
  • How can I access rehabilitation services?
  • How often will I need check-ups after treatment?
  • If the cancer comes back, how will I know? What treatments could I have?
  • Who do I contact if I have concerns about side effects?

 

Understanding Brain Tumours

Download our Understanding Brain Tumours booklet to learn more.

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Expert content reviewers:

A/Prof Andrew Davidson, Neurosurgeon, Macquarie University Hospital, NSW; Dr Lucy Gately, Medical Oncologist, Oncology Clinics Victoria, and Walter and Eliza Hall Institute of Medical Research, VIC; Melissa Harrison, Allied Health Manager and Senior Neurological Physiotherapist, Advance Rehab Centre, NSW; Scott Jones, Consumer; Anne King, Neurology Cancer Nurse Coordinator, Health Department, WA; Dr Toni Lindsay, Senior Clinical Psychologist and Allied Health Manager, Chris O’Brien Lifehouse, NSW; Elissa McVey, Consumer; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Dr Claire Phillips, Deputy Director, Radiation Oncology, Peter MacCallum Cancer Centre, VIC.

Page last updated:

The information on this webpage was adapted from Understanding Brain Tumours - A guide for people with brain or spinal cord tumours, their families and friends (2020 edition). This webpage was last updated in July 2021.

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