Lynch Syndrome

Living with Lynch Syndrome

Lynch Syndrome is quite different to other health conditions – firstly because you are never sure if it will cause cancer and if so, when and which cancer type. And secondly because of the risk to your blood relatives and the need to have those difficult conversations.

It can be difficult to cope with the uncertainty and anxiety that these situations can cause. If you are struggling to cope, talking about your feelings and worries may help. You may want to talk to a partner, family member or friend, or reach out to a local or online patient group.

The uncertainty can be challenging but having a confirmed Lynch Syndrome diagnosis at least means you will have all the necessary screening and treatment options available to you. If you are diagnosed with Lynch Syndrome and later diagnosed with cancer, it is likely it will have been caught relatively early, which means a higher chance of a positive outcome.

If you are worried about having conversations with your family and being able to answer all their questions, your doctor or genetic counsellor should be able to provide you with a ‘to whom it may concern’ letter which contains the key information they need. It is then up to them whether they want to investigate having the genetic test or not. Remember, it is nobody’s fault. And it is better that people are informed.

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