Brain Tumour Advocacy Workshop – Sydney – 12-13 July 2003

A workshop attended in Sydney this weekend by fifty-five people from around Australia decided to establish a national brain tumour advocacy group to be known as Brain Tumour Australia (BTA).

The participants included brain tumour patients, their carers, former carers of patients, friends and relatives, and health professionals.Speaking at the gathering, noted Sydney oncologist Dr Helen Wheeler, who specialises in the treatment of malignant brain tumours said that many brain tumour patients need access to a co-ordinated approach involving the neurosurgeon, radiation therapy and oncologist. Dr Wheeler said that we really do not know what causes brain tumours, some research is concentrating on possible familial connections.Ines Vansevenant, who is the research and support coordinator for the Sydney Neuro-Oncology Group at the North Shore Private Hospital, which hosted the gathering, told the participants that brain tumours are amongst the most devastating type of tumour in humans and are described as “one of medicine’s most frightening mysteries”.Ms Vansevenant said that having a brain tumour is a life-threatening and life-changing event for patients. One patient (name not available for identification), who currently has a brain tumour, told the meeting that a common experience for brain tumour patients is the “difficulty I had explaining my loss and inadequacy when people say I look great but I feel so fragile”.”The appearance of looking well certainly makes for a positive impact on our overall self but it will always mask the depths of emotional turmoil that the patient feels,” he said.”Those close and dear to the patient need to have the fortitude to get behind the mask if they are to ever have a hope of being as supportive for their loved one as they would like,” the patient suggested to the meeting.Mr John Stubbs, representing the recently established Cancer Alliance Network (CAN), encouraged the meeting to establish an advocacy group and said that its existence and work would empower brain tumour patients and their carers to take a coordinated role in influencing policy decisions in many areas.One of the convenors, Denis Strangman of Canberra who lost his wife to a brain tumour in 2001, said that the prognosis for many types of brain tumours had not changed much in the past thirty years.”Yet, in the last 30 years improvements in long term survival for children with leukaemia has jumped from zero to 75%, breast cancer from 40 to 70%, advanced testis cancer from zero to 90%.”This neglect is why brain tumours are now a greater killer than leukaemia of children in the 0 to 14 age group,” Mr Strangman said.Mr Colin Clarke, a scientist who works with the The Australasian Brain Tumour Bank, told the workshop that the Bank prospectively collects brain tumour tissues for later use in genetic research. “These tumours, coupled with a strong clinical database, allows for the development of novel genetic therapies, diagnostic tools as well as a deeper understanding of the underlying biology of brain tumours,” Mr Clarke said.”The Bank is managed within the Cancer Genetics Laboratory in the Kolling Institute of Medical Research at Royal North Shore Hospital and is supported by the Sydney Neuro-Oncology Group and the Andrew Olle Memorial Trust. ABC broadcaster and journalist Andrew Olle died of a brain tumour in 1995. His wife Annette Olle was one of those attending the weekend workshop.The Andrew Olle Memorial Trust is also supporting Sally Smith, a Ph.D. Student in the Neurosurgery Department at Royal North Shore Hospital. She is analyzing the 5,000 tumour admissions recorded in the extensive Northern Area neurosurgery databases since 1976 for trends in occurrence and survival of different types of brain tumour.The meeting adopted a lengthy charter of aims which it will use as the basis of future representations to governments and the medical profession.(Source: Sunday : Ines Vansevenant 0412066777: Sydney: 13 July 2003)