Key points
- Tell your family members if you have been diagnosed with Lynch syndrome.
- Talking to family members can help them better understand their risk for colorectal (colon), uterine (endometrial), and other cancers and next steps to take.
- Family members who get genetic testing should be tested for the same genetic change that you have.
Why talk about it
Your family members can benefit from knowing about your diagnosis of Lynch syndrome. Talk to your family members about Lynch syndrome, and tell them
- Lynch syndrome is passed through families
- A person with Lynch syndrome is more likely to get colorectal (colon), endometrial (uterine), ovarian, and other cancers
- Genetic counseling and testing for Lynch syndrome can provide information about their risk
- They should be tested for the same genetic change that you have if they choose to be tested
- They can take steps to prevent colorectal (colon) and other cancers or find them easier
How do I talk to my family about my Lynch syndrome diagnosis?
WHO: Your parents, siblings, and children are the family members who are most likely to have Lynch syndrome (50% or 1 in 2 chance). Other blood relatives, such as aunts, uncles, nieces, nephews, and cousins, are also likely to have Lynch syndrome. Your healthcare provider or genetic counselor can help you figure out who in your family might have Lynch syndrome and thus would benefit from knowing about your diagnosis.
WHAT: You can share test results, letters from your healthcare provider or genetic counselor, or other information you received about your diagnosis with your family. Telling your family members about your specific genetic change helps their healthcare providers know exactly which test to use and might help save your family money.
HOW: If you need extra support talking to your family, bring a friend. You can also ask a family member to attend your next medical appointment with you. You can also use this sample letter to fill out and send to your family.
Common challenges
How do I talk to my children?
If you have Lynch syndrome, each one of your children has a 1 in 2 (50%) chance of also having Lynch syndrome. Genetic testing for Lynch syndrome is typically not recommended for children younger than 18 but can be considered once your children reach adulthood.
Younger children may not understand what your diagnosis means for them. Children differ in the age at which they are ready to learn about this. Answer any questions they ask, but know they will ask more complex questions as they grow older and are ready to learn more. Children may have fears about the risk to you and themselves. Just as you need time and support to cope with the information and accept it, your children will too.
What if my family does not want to talk?
Talking to some family members about Lynch syndrome might not be easy. Some may be unsure of why they need to know this information. Others may be nervous about receiving a diagnosis of Lynch syndrome.
Remember that family members need to make their own choices about getting tested, whether or not you agree with their decisions. If family members do not want to discuss Lynch syndrome, respect their wishes. Let them know you are available to talk if they have questions, and provide them with places to find information.
When family members do not want to talk about Lynch syndrome, you may feel upset or alone. Seek support from friends, healthcare providers, other family members, or people you know with Lynch syndrome.