Finding out that you have Lynch syndrome can be challenging. It could be an additional worry as this diagnosis not only affects you but also the rest of your immediate family. To know that you have Lynch syndrome is also life-saving information for you and your family, as it will empower you and arm you with a personalised enhanced cancer screening programme that could prevent future cancers, or at least help detect them and enable them to be treated early so you can have a normal and fulfilling life.
It is very important that you tell your parents and siblings about your diagnosis, as they have a 50% chance of having the same genetic change. They need to know as they could have Lynch syndrome too, and this information can help them to take steps to prevent or reduce their risk of developing cancer. Your healthcare professional can help you think about how to have this conversation and share this information, and give you a letter to pass on to your family so they can have the genetic blood test to find out if they have Lynch syndrome or not. If they have Lynch syndrome, their extended family will also be risk.
Perhaps one of the most difficult decisions is how to tell your children and how to approach the conversation as they also have a 50% chance of having Lynch syndrome. Deciding how and when to have this conversation can be difficult.
Genetic testing is not recommended for children younger than 18. It is recommended that you answer your children’s questions using language that is easy for them to understand, and share the information when you feel they are ready to learn about Lynch syndrome. Younger children might not understand what your diagnosis means to them. Children differ in the age in which they are ready to learn about Lynch syndrome and their risk of developing cancer.
In most cases, children cope better when the family is willing to discuss what is happening. This helps them feel valued and respected. Remember that not everyone living with Lynch syndrome will develop cancer, so your children might not develop cancer. Also, cancer treatments, screening and risk reducing strategies improve over time, so the options that will be available to your children when they become adults might be even better than now. Furthermore, if your children have Lynch syndrome and they wish to have children, they will have additional family planning options open to them if they wish to not pass on Lynch syndrome.
Many people are preoccupied when sharing this information because they are concerned how their relative is going to react. People are concerned about causing anxiety to their family and can feel anxious, guilty or responsible about causing this upset. It is always difficult to share what is considered to be bad news. It can help to think about other times when you share bad news, or think about the benefits of having this information, such as helping your relatives to find out if they have Lynch syndrome, and if they do, to help them to take steps to prevent cancer, as this is life-saving information.
It is important to remember that you are not responsible for having Lynch syndrome. This happens by nature and it has been passed on to you from your parents, and your parents from their parents and so on. Also, we cannot control the genes that are passed on to our children, and you didn’t know that you have the Lynch syndrome when you decided to have children. You cannot take responsibility for something that you didn’t know about.
Sometimes sharing this information can be burden. You can ask other close family members to help you talk to the rest of the family, or to give your family the letters and other information that they need to get tested. Also, remember that your healthcare professionals might be able to help develop strategies to share the information.