• It is believed that there are approximately 200,000 people in the UK today carrying the Lynch Syndrome gene. However, only 12,000 have EVER been diagnosed.  Therefore, 95% of those who have Lynch Syndrome don’t know that they have it.

• Most people with Lynch Syndrome are well, but someone with it has a 40-70% chance of developing colon cancer, and women also have a similar risk of cancer of the womb.  All those with Lynch Syndrome have an increased risk of many other types of cancer. The genetic mutations which cause Lynch Syndrome can be passed on from one generation to the next, with a 50% risk of a child inheriting this condition.

• Lynch Syndrome is estimated to cause around 3.5% of bowel cancer cases in the UK every year, many of them under the age of 50 years.

• Once identified, carriers’ cancer risk can be effectively reduced through preventative strategies, though their lifetime, managed by the National Lynch Syndrome Registry screening programme.

• A diagnosis of Lynch syndrome empowers people with this condition to take control of their future by avoiding or reducing their risk of cancer.
• It is important to make positive choices about our health by having the best available information about risk.
• People with Lynch syndrome should be placed in a screening or surveillance programme to receive regular colonoscopy every 18 months to two years. This can help reduce the chance of dying from bowel cancer by as much as 72%.

• Bowel Cancer UK is leading a campaign to improve the diagnosis and care of people with Lynch Syndrome. Eve Appeal is doing the same for the Lynch gynaecological cancers.

• GPs can also play a vital role in the identification of Lynch Syndrome carriers.
  • What to look out for: multiple cases of bowel and gynaecological cases in any immediate family.
  • What to do if you suspect someone of having Lynch Syndrome: Lynch syndrome is usually diagnosed by performing a blood test in someone where this diagnosis is suspected, in order to find a faulty gene. 
  • Disproportionate positive impact from a diagnosis: For every new primary diagnosis we also diagnose 2-3 other family members. 

Please take a look at the following materials created by the Lynch Syndrome & Family Cancer Clinic at St Mark’s Hospital in collaboration with the Royal Marsden: 

Lynch Syndrome online training for primary care clinicians - RM Partners