Tens of thousands of Australians could carry inherited cancer gene – but only 5% of them may know it
Lynch syndrome, a little-known inherited gene mutation, passed on from parent to child, may be responsible for a growing number of different cancers in families. Lynch Syndrome Australia (LSA) is launching an appeal to healthcare professionals to gen up on this inherited genetic cancer risk on 22 March, International Lynch Syndrome Awareness Day.
All over Australia, families that just seem to have been unlucky with cancer – a sister with endometrial cancer, a cousin who died from pancreatic cancer, a granddad with recurrent bowel cancer – may have been passing on an inherited cancer condition and are unaware that these cancers are all related: caused by a cancer repair gene not doing its job properly.
Lynch Syndrome Australia, one of the country’s newest charities, is marking International Lynch Syndrome Awareness Day on 22 March with the launch of Knowledge is Power, a campaign to raise awareness, amongst healthcare professionals, of seemingly unrelated cancer clusters in families, asking them to help increase understanding of Lynch syndrome in the medical world.
Beth Fairbank, a Lynch syndrome survivor and founder of LSA, explains,
“It’s a struggle to make it through the maze to a Lynch syndrome diagnosis. We need to negotiate family secrecy, lack of information and general lack of understanding about Lynch syndrome amongst even some of the best healthcare professionals.
“Lives have been saved by the knowledge of, and timely advice from, doctors. It is only when a doctor listens and takes an accurate family history that alarm bells begin to ring. Even then, the process of genetic counselling and genetic testing can be lengthy, daunting and inconclusive. It’s a labyrinth to negotiate, often while people are dealing with traumatic diagnoses.”
Mrs. Fairbank concludes:
“This Lynch Syndrome Awareness Day, we would like to kick start our Knowledge is Power campaign with a plea to healthcare professionals to join our cause and become an advocate for patients and indeed, within the profession, to spread the word about Lynch syndrome amongst peers and colleagues.”
Professor Robyn Ward, head of the Adult Cancer Unit at the Lowy Cancer Institute, and a speaker at the recent Lynch Syndrome Awareness Day in Sydney, concurs:
“I am delighted to be the first to sign up and support Beth and her team of volunteers. Getting to a Lynch diagnosis requires a clear partnership between patient and practitioner and, the more widespread the understanding of the connections between disparate Lynch syndrome cancers, the better our chance of diagnosis and continued surveillance. I wish this campaign every success.”
Healthcare practitioners will be asked to support the campaign via the organisation’s website or Facebook page and encourage their colleagues to do the same. The campaign aims to have 200 active supporters from the healthcare profession by this time next year.