What is Lynch Syndrome?
Everyone receives (inherits) half of their genes from each of their biological parents. However, sometimes there are changes or alterations in a gene that can increase the risk of certain cancers. So, if your parent has a gene alteration, there is a 50% chance of it being passed down to each child.
Two of the most common inherited risk factors are Lynch Syndrome and BRCA gene alterations.
Lynch Syndrome increases a person’s lifetime risk of bowel cancer to 80%, and womb cancer to 50%, as well as ovarian, urethral, gastric, pancreatic, prostate and brain cancers, but to a lesser extent. It is estimated that 1 in 400-450 people in the UK have it.
But our survey found… only 3 in 100 (3%) people in the UK have heard of it (YouGov, Feb 2023).
What does this mean for us at Eve?
These findings remind us that public awareness of inherited cancer risks like Lynch Syndrome are still too low and that many more people need to know about these risks. For example, it is estimated that 95% of people with Lynch Syndrome are unaware they have it. At Eve, we are working hard to spread the knowledge, so that more people can be aware of their cancer risk.
As our CEO, Athena, explains: ‘Raising awareness of inherited cancer risks can help people know when they are at an increased risk of cancer, be vigilant, get tested and take measures that could potentially save their life, and that of their family members. Knowledge really is power.”’
We have lots of information on our website on inherited risks, including a newly launched Guide on Lynch Syndrome.
What does this mean for you?
If you know you have a strong family history of certain types of cancer, especially bowel and womb cancer, then speak to your GP to find out whether you are eligible for testing.
If you have been tested and find out that you have an inherited increased risk of cancer, we understand that it can be a lot to process. Though, it may offer you some opportunities to try to stop certain cancers from developing or methods to catch them as early as possible, when they are most treatable. This can be through risk- reducing surgery or regular surveillance.
It does also mean that you can educate yourself on the symptoms of the cancers you are more risk of and be vigilant with spotting them and getting checked out.
What is having an inherited risk like?
Cara Hoofe, who is living with Lynch Syndrome and has been treated for bowel and womb cancer, says: “I found out I had Lynch Syndrome shortly after being diagnosed with bowel cancer aged 32. I hadn’t heard of Lynch Syndrome, but I did know that bowel cancer could be hereditary, my father had it in his 40s. My advice to anyone would be if you have multiple cases of cancer in your family, especially bowel and womb, and you are concerned, go to your GP and have a conversation about it. They are best placed to advise you and point you in the right direction.”
Where can I find out more information and support?
Ask Eve, our gynae nurse information service can help you if have any worries about inherited risks, gynae health, gynae cancers and want to speak to someone. We are always here to help with free info and advice on nurse@eveappeal.org.uk or 0808 802 0019.