Don’t let another family be blindsided by Lynch syndrome

What's the Problem?

Every year, more than 1000 Australians are believed to suffer cancers caused by a gene mistake called Lynch syndrome and they don’t even know it. They are unaware of their risk because a simple test of each tumour that could indicate a gene mistake is not being carried out.

How Can We Fix It?

We need to test each tumour from the most common Lynch syndrome-related cancers to find out if there is a risk. People whose cancers indicate that there may be a problem can then be offered genetic counselling and genetic testing.

What Can I Do?

Don't let another family be #blindsidedbyLS.
Join the growing call to have every bowel, endometrial and ovarian cancer tested - today!
Add your voice or make a donation

What’s the Problem?

Too many people with Lynch syndrome don’t know they are at risk.

Every year, more than 1000 Australians are believed to suffer cancers caused by a gene mistake called Lynch syndrome and they don’t even know it. They are unaware of their risk because a simple test of each tumour that could indicate a gene mistake is not being carried out. They and their families often go on to have many more cancers, without understanding why.

Although it is best practice to test many of these tumours and find these families, this simply does not happen(1). And because this doesn’t happen, only about 4000 out of over 80,000 Australians with Lynch syndrome have been identified.

We need to make sure no more families are blindsided by Lynch syndrome.

How Can We Fix it?

We need to test each tumour from the most common Lynch syndrome-related cancers to find out if there is a risk.

People whose cancers indicate that there may be a problem can then be offered genetic counselling and genetic testing. It is simple and relatively inexpensive to do but this tumour test does not happen often enough.

Every day we delay, we miss a chance to diagnose, help and care for another family with Lynch syndrome.

What Can I Do?

Join the campaign now.

Don’t let another family be #blindsidedbyLS. Do something for Lynch Syndrome Awareness Day.

Join the growing call to have every bowel, endometrial and ovarian cancer tested –  today.

The Facts

The most common Lynch syndrome cancers are bowel and endometrial (also known as uterine/womb). Each year, over 16,000 Australian men and women develop bowel cancer and 2,500 women develop endometrial cancer. Up to 5% of these cancers are likely caused by Lynch syndrome. Ovarian cancer is also a high risk for many women with Lynch syndrome and as many as a quarter of ovarian cancers are caused by inherited conditions.

A simple test on a sample of cancer tissue shows whether a Lynch syndrome gene mistake might be involved. After genetic counselling and testing, if the result is positive for Lynch syndrome, blood relatives are offered testing too.

Someone who knows they have Lynch syndrome can screen for some cancers and take steps to minimise the risk of other cancers. Yet over half of Australians with Lynch syndrome don’t know that they are at risk until they get their first cancer. And for some, that’s already too late.

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The Science

The experts agree. In October 2017, Cancer Council Australia recommended that all bowel cancers should be tested for Lynch syndrome(2). Researchers at Cancer Council New South Wales are investigating how effective and cost-effective it is to test everyone diagnosed with the most common Lynch syndrome cancers(3). But this is just the start. And, of course, research takes time.

The recommendations for bowel cancer testing must be put in place without delay in all public and private hospitals around the country and be expanded as soon as possible to include endometrial and ovarian cancer, too.

The Stats

Bowel Cancer

  • In 2017, over 16,000 Australians were diagnosed with bowel cancer (estimated)(4)
  • 4,171: estimated number of deaths in 2017 from bowel cancer(5)
  • 3-5% of all bowel cancers are caused by Lynch syndrome so up to 750 Australians a year are likely to have Lynch-related bowel cancers

Endometrial Cancer

  • Just under 3,000 cases of endometrial/uterine cancer were estimated to be diagnosed in 2017(6) and there were 453 deaths due to these cancers.
  • 3-5% of endometrial cancers are due to Lynch syndrome so up to 150 Australians a year are likely to have Lynch-related endometrial cancer

Ovarian Cancer

  • 1613 cases of ovarian cancer are expected in 2018 and it is estimated that 1069 deaths will be due to ovarian cancer(7)
  • Research indicates that many as 25% of ovarian cancers are due to inherited mutations, primarily Lynch syndrome and BRCA(8), so between 100-300 Australian women a year could have Lynch-related ovarian cancer

Yet, so far, fewer than 4000 out of a projected 80-85,000 people with Lynch syndrome have been identified across Australia(9).

 

Don’t let another family be #blindsidedbyLS. Do something for Lynch Syndrome Awareness Day. Join the growing call to have every bowel, endometrial and ovarian cancer tested –  today.

References

[1] Report being finalised by Dr Natalie Taylor, Lead for Health and Healthcare Behaviour Change Research, in the Centre for Healthcare Resilience and Implementation Science (CHRIS), Australian Institute of Health Innovation (AIHI), at Macquarie University, Translational Cancer Research Network (TCRN).

[2] Clinical practice guidelines for the prevention, early detection and management of colorectal cancer https://wiki.cancer.org.au/australia/Guidelines:Colorectal_cancer/Lynch_syndrome

[3]  http://purl.org/au-research/grants/nhmrc/1080246

[4] https://www.aihw.gov.au/reports/cancer/cancer-compendium-information-and-trends-by-cancer-type/report-contents/colorectal-cancer-in-australia

[5] https://www.aihw.gov.au/reports/cancer/cancer-in-australia-2017/data Chapter 6 Tab a6.4

[6] https://endometrial-cancer.canceraustralia.gov.au/statistics

[7] https://ovarian-cancer.canceraustralia.gov.au/statistics

[8] http://www.onclive.com/publications/oncology-live/2018/vol-19-no-3/inheritance-matters-the-race-to-prevent-new-ovarian-cancer-cases

[9] *Lynch Syndrome Australia report page 22 https://lynchsyndrome.org.au/wp-content/uploads/2017/03/Lynch-Syndrome-Report.pdf