Lynch Syndrome Awareness Day: 22 March 2024

Published on: 22 March 2024

Today is Lynch Syndrome Awareness Day. Lynch syndrome (LS) is a condition that can run in families. Lynch Syndrome can increase your risk of developing cancer to 80% over your lifetime. The genetic change seen in Lynch Syndrome can lead to more abnormal cells developing which then multiply and become cancerous.

Everyone who is diagnosed with bowel or endometrial cancer is now screened for Lynch Syndrome as part of a national NHS programme.

A genetic diagnosis of Lynch Syndrome means that doctors can treat your cancer more effectively, but it also means your family can access genetic testing for Lynch to help prevent cancer. 

Adam Shaw is a Clinical Geneticist and heads up the Genetics team at Guys & St Thomas’ Hospitals. He tells us why its important to screen cancer patients for the condition.

Adam said: “When I started in genetics 22 years ago, there weren’t many genetic tests we could do, but now we know it’s the future for cancer treatment and prevention.”

Lynch Syndrome is one of the most common genetic conditions, with one in 350 people having the genetic change that causes it.  Adam added: “That’s about 25 patients in every GP practice, but 95% of people don’t know they have it."

Adam is part of a national team who are working with NHS Trusts to establish their own Lynch Syndrome screening pathway. The screening pathway can support patients once they have a confirmed LS diagnosis, as well as organising testing for their families. There is also a dedicated Lynch Syndrome nurse in each Trust offering training, education and support.

Anyone with colorectal or endometrial cancer should also get screened for Lynch Syndrome.

Adam said: “A Lynch Syndrome diagnosis can open up new treatment options for cancer patients, such as immunotherapy. By delivering Lynch Syndrome screening in your own Trust you can reduce the waiting time, be able to treat your patient more effectively and prevent future cancers."

Adam continued: "Screening gives us the one chance to prevent future cancers. Don’t miss this chance to put prevention in place.

"Look at the whole patient – not just the tumour in front of you. Whilst it is of course important to treat people for the cancer they have right now, it is equally important for the patient, and their families, to prevent future cancers.

Finally, don’t be scared of genetics. Everyone can do genetics. We can help you to learn and set up your own testing. It’s much quicker for you and your patients."

Find out more about the genetic condition here: Lynch Syndrome – South East Genomics

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