Lynch Syndrome Awareness Day 2016 – Media Release

Cancer advocates call for improved diagnosis of common but little-known inherited cancer gene.

Lynch Syndrome Australia’s first and only Lynch syndrome education and advocacy group is launching a campaign today to identify many more Australians who are at risk from this inherited susceptibility to cancer.

Launched on International Lynch syndrome awareness day, Lynch Syndrome Australia’s (LSA) campaign,  ‘Because you deserve to know’, highlights the unacceptably low rate of diagnosis for Australia’s most prevalent inherited cancer condition for men and women. Currently, only 5% of those who have this mistake in their cancer repair genes know they are at risk and can take steps to protect themselves.  LSA’s short film encourages Australians to investigate their own family cancer history to see if they might have up to 70% risk of getting one or more cancers during their lifetime.

Beth Fairbank, founding director of LSA explained why.

“Health consumers shouldn’t have to rely solely on themselves to find out if they are at risk from Lynch syndrome. It should be a lifelong partnership between patient and doctor, but at the moment this is just not working.

“It is best practice in Australia for all bowel and endometrial tumours in those under 50 to be tested for indications of Lynch syndrome but in practice, this happens less than half the time. And there is a knock-on effect: once one cancer is diagnosed, a whole family can then be tested and protected.

“It is also best practice for GPs to take a full family health history for each patient. But many do not and even those that do, don’t always understand that many different cancers in the same family can actually be connected.”

This one mistake in a cancer protection gene is responsible for hundreds of different cancers every year in Australia. Lynch syndrome affects up to 1:250 Australians, yet most of them (95%) don’t even know they are at risk. The gene fault can be the cause of more than eight different, often fast-growing cancers, starting from a young age. For example, amongst blood relatives, an uncle’s pancreatic cancer, grandmother’s endometrial cancer and a 22 year-old niece’s bowel cancer can be caused by the same, inherited fault in a cancer protection gene.

“Until GPs are better informed and all bowel, endometrial and ovarian cancer tumours are routinely screened for Lynch syndrome, tens of thousands of people will remain ignorant of their lifelong cancer risk. So it’s our job to tell Australians because everyone deserves to know if they are at risk of Lynch syndrome, ”concluded Fairbank.

ENDS

Facts

  • Approximately 90,000 Australians will find out that they have cancer this year. For some cancers, such as bowel and endometrial, between 5-10% of these will be caused by Lynch syndrome
  • With improved diagnosis some of these people would have known that they were at risk and could have been taking the right steps to protect themselves with preventative measures such as surveillance, chemo-prevention, lifestyle changes and prophylactic surgery.
  • Think 321: strong family cancer history of Lynch syndrome-associated cancers involving 3 family members or more, over at least two generations with one diagnosis under 50 means visit your doctor and investigate your family’s health history.
  • Over half of those few people diagnosed with Lynch syndrome only find out about it after they get cancer and because many of them are young when diagnosed (age) and cancer signs are often disregarded by their doctor.

About Lynch Syndrome Australia

Lynch Syndrome Australia (LSA) was founded in 2014 and is volunteer-run and survivor-led. It is the only body dedicated to education and advocacy for those living with Lynch syndrome in Australia. Every dollar raised supports education, seminars, campaigning and advocacy on behalf of those with Lynch syndrome.

In 2015, LSA conducted a world-first, comprehensive survey into the experience of Living with Lynch syndrome. 465 people participated internationally with over half of these in Australia. The study investigated the physical, emotional, financial and psycho-social impacts of a Lynch syndrome diagnosis, treatment and ill-health on individuals and their families.

Our website

www.lynchsyndrome.org.au

A short film: Because you deserve to know

https://www.youtube.com/watch?v=_dARj1Y4R0w

On Facebook

https://www.facebook.com/LynchSyndromeAustralia

On Twitter

@LynchSyndromeAU

Media contact:

Susan Morris

Lynch Syndrome Australia

susanmorris@lynchsyndrome.org.au

0420 294191