Australia’s untold health story: Lynch syndrome – Media release

A new health report from consumers reveals over 80,000 Australians, at increased risk of developing one or more often-aggressive primary cancers in their lifetime, don’t actually know that they’re at risk from a hereditary cancer gene.

Lynch Syndrome Australia Founding Director, Ms Beth Fairbank said only 5% of Australians with Lynch syndrome have been diagnosed.

“It’s imperative that people with the gene are diagnosed early in order to increase cancer prevention and early detection. For a person with the gene, they have a 70% chance of developing a Lynch syndrome-related cancer (including bowel, endometrium, pancreas, stomach, breast, prostate, kidney and skin cancer),” said Ms Beth Fairbank, Lynch Syndrome Australia Founding Director.

Lynch syndrome is a mistake (mutation) in a gene that should be repairing cells and affects whole families across generations. When people with Lynch syndrome develop cancer, they often have more than one cancer and their cancer develops far more quickly.

Lynch Syndrome Australia has released Lynch syndrome: Australia’s untold health story, a report that calls for a number of important recommendations to improve diagnosis, risk management and support. It draws on the findings of a world-first study of the lived experience of people with Lynch syndrome and outlines responses from the 251 Australian participants. The findings reveal many Australians with this condition are misdiagnosed, misunderstood and are missing out on essential and appropriate care and support,” said Ms Fairbank. “Things must change.”

“First and foremost, we are calling for all bowel and endometrial tumours to be tested when cancer is first diagnosed. This is our best chance of identifying families who may be at risk.” said Ms Fairbank.

GPs and other health professionals must play a greater role in identifying people who have this inherited risk and should be encouraged to take a comprehensive family cancer history. Other recommendations involve establishing a national register to help individuals and to aid research; setting up centres of excellences and providing risk management and psycho-social care, especially designed for the unique needs of the 1 in 280 Australians who carry this mutation.

“Lynch Syndrome Australia is building working relationships with peak bodies, policy-makers and cancer organisations to make sure that tens of thousands of Australians are no longer misdiagnosed and misunderstood.” said Ms Fairbank.

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Media enquiries:

Susan Morris, Lynch Syndrome Australia

0420 294 191