Lynch Syndrome patient support
Understanding more about this condition
You will have been sent a link to this patient information site by a doctor or nurse involved in your existing cancer pathway or because you are a family member of someone being treated.  This series of videos and supporting information, are only the first part of the help we can provide. We know it’s really important that you are fully informed and have all the latest advice and guidance at your fingertips, to help with decision making.
The NHS has begun to roll out a genetic testing programme for lynch syndrome, an inherited condition that increases the risk of certain cancers; including bowel, ovarian and pancreatic.
It is estimated that 1 in 400 people in England have Lynch syndrome (equivalent to around 175,000 people), but just 5% are aware they are living with the condition.
What is Lynch Syndrome?
Hear from Karen Westaway, the lynch syndrome project lead in West Yorkshire. She gives you some of the facts and figures that might help you better understand the condition.
You can find out more about the work of the Cancer Alliance in our region by clicking on their logo below that will take you to their website
Testing for Lynch Syndrome
Cancer nurse specialists, explain the testing process and reassure you about the options you have and the time you can take in deciding what’s right for you.
There is a helpful booklet on predictive genetic testing for Lynch syndrome. You can view this PDF by clicking the Yorkshire Regional Genetic Service logo below.
For more information about genetic testing, you can also visit the Macmillan website by clicking on its logo.
Meeting the genetic counselling service
Kathryn explains her role as a genetic counsellor in Yorkshire, serving nearly 4 million people. The service addresses genetic conditions and their family impacts. Patients can undergo blood or biopsy tests, with blood tests confirming Lynch syndrome.
Genetic counsellors provide support post-diagnosis, discussing management options and family implications. They guide patients in preparing for appointments, which last 30 to 60 minutes, and provide a detailed summary letter afterward.
Lynch Syndrome UK
Lynch Syndrome UK is a UK charity that offers additional support and information for all people with Lynch Syndrome. Some of the support they provide includes:
- an online support group for people that is patient lead, offering advice, support and experience
- up to date advice on the website that can be downloaded and printed
- people can be sent “the beginners guide to Lynch Syndrome” as well as request a patient passport
- a new digital app has recently been launched with Professor Julian Barwell – access to this new app can be requested through the website
- a patient conference every year in March which gives people and their families an opportunity to ask questions of the clinicians in the room about their genetic disorder. This conference is alway’s well attended and clinicians are also welcome to come along. Please find more information on the conference here
