Related Links

Meningioma Patient Education Day - July 2021

A virtual event run by The Brain Cancer Group, Care 2 Cure, and co-hosted with Brain Tumour Alliance Australia (BTAA) on 30 July 2021.

Watch the complete video of the forum here.

Sydney Patient Education and Support Forum - May 2021

Hosted by NSW Neuro-Oncology Group (NNOG) and Brain Tumour Alliance Australia (BTAA).

Wesley Conference Centre, 220 Pitt St Sydney - 20 May 2021.

With support from NSW Cancer Institute, The Brain Cancer Group, The Cancer Council, and Cure Brain Cancer Foundation.

And special thanks to the William Lazaris bequest.

Watch the complete video of the forum here.

Brain Cancer Patient Education and Support Forum October 2019

Held at the ICC Sydney in Darling Harbour on 27 October 2019 in conjunction with the 12th COGNO Annual Scientific Meeting.

Links to presentation slides:

Colin Watts - Advances in Neurosurgery

Lynette Masters - Advances in Neuroimaging

Helen Shih - Advances in Meningioma Management

Judith Lacey - Advances in Supportive Care for Brain Cancer

Andrew Cole - Driving with Brain Cancer

Seema Nagpal - Advances in Systemic Therapy for Brain Cancer

Brain Tumour Support and Education Forum May 2019

Held at the Wesley Centre in Sydney in May  2019.

Link to videos here.

Brain Tumour Support and Education Forum May 2018

Held at the Wesley Centre in Sydney in May 2018.

Links to videos here.

Gliolan

GLIOLAN® (aminolevulinic acid hydrochloride) is an orally administered drug used for the visualisation of certain brain tumours (particularly glioblastoma multiforme) during tumour surgery.

Gliolan® FAQ

Bevacizumab (Avastin and Mvasi)

Avastin (Bevacizumab) was listed on the Pharmaceutical Benefits Scheme (PBS) on 1 August 2019, but on 1 June 2021 it was replaced by Mvasi, a biosimilar brand of Bevacizumab. 

It is listed under Section 100, as a medicine funded through the Efficient Funding of Chemotherapy (EFC) Program.

See the Department of Health information flyer in relation to Mvasi.

The Pharmaceutical Benefits Advisory Committee (PBAC), has recommended that Australians with recurrent and refractory glioblastoma (GBM) - a common and aggressive form of brain cancer, should have access to Bevacizumab via the (PBS) regardless of their ability to pay.

The PBAC has acknowledged that treatment options for patients with recurrent GBM are currently extremely limited, and no new therapies or treatments have been approved and placed on the PBS since Temozolomide in 2007, which only provides an effective treatment for a proportion of patients, and statistical improvements in Progression-free Survival (PFS) and Overall Survival (OS).

Bevacizumab is not seen as a cure either, but it may provide relief from some symptoms, and may potentially improve PFS and OS as well. It has been noted that Bevacizumab is not without significant side effects, and has not always produced positive outcomes. BTAA understands the Bevacizumab may help patients with relapsed or recurrent glioblastoma that have progressed on, or are intolerant to Temozolomide.

Selected useful web resources

  • Cancer Directory - The Cancer Council NSW cancer information website provides the Australian community and health professionals with a credible and comprehensive online directory of trusted Australian cancer care publications and resources published since 2008. The Website provides direct links to resources on other websites that meet quality criteria determined by Cancer Council NSW. 
  • Health Direct (a FREE* 24-hour telephone health advice line staffed by Registered Nurses to provide expert health advice. BTAA has not yet evaluated the nurses' level of knowledge about brain tumour-specific health challenges).
  • Brain Tumour Healing Program  Canadian website ( Finding Light in the Darkness: Reclaiming Wholeness after a Brain Tumour, A "Skills for Healing" retreat documentary) 

International BT organisations  

Brain tumour research organisations

Australian Brain Tumour related consumer groups 

General Cancer Groups

Brain Tumour Health Professionals

BTAA is developing a register of Australasian professionals with a professed interested in brain tumour treatment.

We offer no rating as to who might have more experience or knowledge from among these specialists but we do encourage patients and caregivers to ask their initial specialist extensively about their interest and experience in the area that is relevant for your care. It is also important to remember that you have a right to a second opinion.

Developing a list of specialists is a very difficult task because many of the oncologists, for example, do not specialise solely in brain tumours but work in other cancer fields and many of the neurosurgeons undertake other neurosurgery apart from craniotomies for brain tumours.

A list of Royal Australasian College of Surgeons is available here.

Search for a medical oncologist here. (Information is currently being updated)

Health Complaints Commissioners

Any complaints about the medical service you receive should be directed to your local health complaints commissioner.

Links to the websites for health care complaints commissioners in Australia and New Zealand are available here:

beyondblue Directory of Medical and Allied Health Practitioners in Mental Health

Click here to access this directory. Depression can be a problem associated with any serious illness. Please note the disclaimer on the BeyondBlue website.

Last Update 29 April 2019

Email enquiries@btaa.org.au for suggestions to update this list and to let us know about new resources.