Five things patients need to know this Lynch syndrome awareness day

Lynch syndrome is a genetic condition which increases a person’s risk of developing bowel cancer. It also raises the risk of womb, ovarian, brain and other cancers. It’s estimated that around 175,000 – 200,000 people across the UK have Lynch syndrome. Yet fewer than five in every 100 people with Lynch syndrome in the UK have been diagnosed.  

We’re campaigning to change this, and most recently published a new report to drive improvements in the diagnosis and care of people with Lynch syndrome. But what should you know to get the best personalised care and treatment? 

Knowledge is power 

Knowing your diagnosis and participating in a surveillance programme reduces your risk of bowel cancer

Knowing whether you have Lynch syndrome matters as it’s a manageable condition. Once you know you have it, you can have regular bowel cancer checks (surveillance colonoscopies). These regular checks can detect bowel cancer at an earlier stage when it’s more likely to be treatable. In some cases, it may even prevent it from developing.  

Surveillance colonoscopies are available for people with Lynch syndrome from age 25 or 35 to 75, depending on the type you have. In England, these colonoscopies are provided through the Bowel Cancer Screening Programme. 

If you have Lynch syndrome, it’s important that you’re offered these regular checks to monitor your condition and catch bowel cancer early. If you haven’t had a colonoscopy since your diagnosis or in the last two years, get in touch with your GP to arrange one.  

Some people with Lynch syndrome may benefit from other ‘risk reducing strategies’. For example, some people may be prescribed daily aspirin, as studies have shown that it may reduce the risk of bowel cancer. In addition, women may be referred to obstetrics and gynaecology to discuss how they can reduce their risk of developing womb (endometrial) cancer.  

You can reduce your close relatives’ risk of bowel cancer and other cancers 

Lynch syndrome is a genetic condition and if you have it, there’s a one in two chance your close relatives (sibling, parent, child) will also have it. By getting diagnosed, you can support your close relatives to receive the same genetic testing to find out if they have Lynch syndrome. 

If you are diagnosed with Lynch syndrome and live in England, you should be offered letters for your close relatives to take to their GP. These letters will explain their risk of the condition and encourage referral to genetic services who can provide counselling and testing for Lynch syndrome. Offering these letters is not part of guidance in Scotland, Northern Ireland, and Wales, but some hospitals can still provide them, so it’s worth asking if your hospital can provide you with letters as one way to help your close relatives get a referral for genetic testing.  

Tracy, a bowel cancer patient, shares her experience: “Despite my clear family history of various cancers, including bowel cancer, none of my family members were tested for Lynch syndrome until I was diagnosed. If they were, my Lynch syndrome could have been identified through cascade testing. Instead, I was diagnosed with bowel cancer after going to my GP and then received a Lynch syndrome diagnosis. Had I been diagnosed through cascade testing, like my children, then my cancer may have been prevented or picked up at the earliest stage through surveillance colonoscopies.” 

A diagnosis can affect your treatment 

A Lynch syndrome diagnosis is also important because it impacts your treatment if you have bowel cancer. People with Lynch syndrome who are diagnosed with bowel cancer tend to have tumours that are more responsive to immunotherapies such as pembrolizumab for advanced bowel cancer. Therefore, having a Lynch syndrome diagnosis gives patients access to personalised treatments that will be most effective in treating their cancer.  

Who can be tested for Lynch syndrome?  

• You’ve been newly diagnosed with bowel cancer 
• You’ve had bowel cancer, but not been tested 
• Your close relative (sibling, child, parent) has Lynch syndrome  

• You’ve had womb (endometrial) cancer before age 50 
• You’ve had multiple primary cancer diagnoses 
• Several family members have had cancers related to Lynch syndrome such as bowel, womb and ovarian 

If any of these apply to you, get in touch with your GP to discuss genetic testing for Lynch syndrome.  

Cara, a bowel cancer patient, shares her views on the importance of having a Lynch syndrome diagnosis: “Identifying people in the population that have Lynch syndrome means that they can, hopefully, get appropriate surveillance which is key for prevention and early detection. We know that early diagnosis means a greater chance of survival and that’s what we need for more people.” 

Support is available

Our nurses are here to help. They can provide you with information and signpost you to further support. If you have any questions or concerns about Lynch syndrome and bowel cancer, email nurse@bowelcanceruk.org.uk. 

Lynch Syndrome UK are a charity who provide support to people and their families affected by Lynch syndrome in the form of information, signposting, and listening. They work to increase public awareness of the condition, educating members of the general public and healthcare professionals. They provide free information booklets, leaflets and a new patient passport. You can also email them directly at team@lynch-syndrome-uk.org if you have any questions or need further advice.

• Find out more about Lynch syndrome
• Read our report 'Finding the missing 95%: Unlocking the potential of Lynch syndrome services'
• Read our real life stories