Living with Lynch syndrome can be a double-edged sword. On one hand, it could be worrying to know that you have a higher likelihood of developing cancer. On the other hand, you are armed with knowledge and with an enhanced screening programme that will help you prevent these cancer types and live a normal and fulfilling life. It will empower you to manage your care and reduce the risk of cancer, or enable it to be detected and treated early.
It is important to know that you are not alone. There are many people in the UK who live with the same syndrome, just like you, and live a fulfilling life.
If you would like to meet other people living with Lynch syndrome, there are associations that can help you get in touch with people just like you. They have useful resources, organise events, and online as well as face-to-face support groups such as Lynch syndrome UK.
Additional sources of emotional support
There are additional sources of emotional support. If you would like additional support, we suggest that you discuss your wishes with a member of your healthcare team who will be able to help you, or choose and signpost you to the right service.
Below are some of the services available with information about what they offer and how to contact or self-refer to them.
One-to-one therapy: If you would like to access one-to-one therapy, there is a national programme called Improving Access to Psychological Therapy (IAPT). You can self-refer to this service.
- Click on the link and enter your postcode and click ‘start now’.
- It will give you some information about what happens when you self-refer – Click ‘Continue’.
- Enter your GP postcode and you will get a list of service providers.
- Select a service that you can self-refer to and follow the instructions (either fill in the online form or call).
- Someone from the psychological therapies service will get in touch and will give you more information.
Macmillan Support Line: The Macmillan Support Line offers confidential support to people living with cancer and their loved ones. The telephone line is open 8am to 8pm: 0808 808 00 00. There is also an email and online chat function.
Breathing space: Free, confidential, web-based service for people experiencing low mood, depression and anxiety. Tel: 0800 83 85 87
Samaritans: Free, confidential, web-based service providing emotional support to anyone in emotional distress, struggling to cope, or at risk of suicide. Tel: 116 123
Togetherall: Free in some London areas. For anxiety and depression and other common mental health issues. Also provides social support groups.
Apps for relaxation, stress reduction and anxiety management
- Feeling Good app
- PZIZZ provides help with sleep hygiene
- CATCH IT provides help with negative thoughts
- WorryTree to help manage your worries
- Motivation apps to remain active, drink less, easy meals, smoke cessation, etc
If you have been diagnosed with cancer, and you are having genetic testing, you are having a diagnostic genetic blood test. This might confirm your diagnosis of Lynch syndrome.
If you apply for a new insurance after your diagnostic genetic test, companies can ask you about your medical history and any diagnosis that you have. They will also ask you about your family history. You will have to disclose any health condition that has been diagnosed by genetic testing. However, what is likely to affect your insurance assessment is your cancer diagnosis and family history, even if you recovered from the cancer and treatment has been completed.
What is important to know is that you do not need to disclose that you have a genetic test or your results to any insurance company for the policies that you already have in place.
If you have any questions about how your genetic test could affect your insurance, more information is available from:
- The Association of British Insurers
- The Code on Genetic Testing and Insurance
- Insurance implications for family members that do not have cancer and are going to have a predictive genetic blood test are different. More information is available from Genetic Alliance UK.