Presenter: Yelena Wu, PhD
Talk: Talking to Your Kids about Lynch Syndrome
PRESENTATION TRANSLATED TO SPANISH: CLICK HERE
When should you test your children for Lynch syndrome?
| - Typically test between age 18-20
- Most cancer screening recommendations for Lynch syndrome do not start until over age 18.
- Testing over age 18 allows child the autonomy to make their own decision about testing and provide informed consent. Also allows child to develop the skills to cope with a diagnosis of Lynch syndrome and the management recommendations.
- May test younger than age 18 when:
- Lynch syndrome-related cancers have been diagnosed in a relative under age 18
- Both of the child’s parents have Lynch syndrome
- Thoughts to consider if discussing testing a child under age 18 for Lynch syndrome:
- What would it change for the child in the next year, the next five years?
- How does a positive or negative test result fit with expectations for the child?
- Will this cause more or less worry for the child? For the parent(s)?
- Is the child planning a big move in the near future (college, living abroad) during the time in which they will need to start screening?
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What are some things to consider when talking to your children about Lynch syndrome?
| - Parent(s), you know your children better than anyone.
- This is not a conversation that needs to be rushed.
- Wait until you have processed your own diagnosis first of Lynch syndrome before talking to your child about it.
- Consider your child's maturity, tendency to worry, and how they handle stress.
- Consider when, where, and how to tell your child.
- Reinforce that this will be an ongoing conversation and that your child is encouraged to ask questions any time.
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Any tips about this process?
| - Start with a focus on health:
- Example: "I wanted to talk with you today about something related to keeping me healthy"
- Ground in information the child may already know:
- Example: "Do you remember when Aunt Sarah went to the hospital last year because she was sick?"
- Be direct about your test results – but tailor the language for your child's age and level of understanding:
- Example: "Because Aunt Sarah had colon cancer, I had a test at the doctor's office that says I have a change in my genes that makes it easier for me to get cancer too."
- Reassure the child about your health (if appropriate) and how the information from the test will help keep you healthy
- Discuss ways in which the whole family can stay healthy
- Prepare for a range of reactions and acknowledge their responses and additional questions. Some children can engage in magical thinking and wonder if they had any role in why you have Lynch syndrome.
- You can always reach out to your physician or genetic counselor to help with questions your children have.
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| Presenter: Kimberly Kaphingst, ScDTalk: Family Communication
PRESENTATION TRANSLATED TO SPANISH: CLICK HERE
Why should you talk to family members about Lynch syndrome?
| - To provide information about their health including cancer risks, genetic testing, and risk reduction strategies
- To provider information that would be useful in life planning
- It allows social support to be shared in the family
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Whom in your family should you talk to about Lynch syndrome?
| - Start with close family (parents, siblings, and children) and work outward.
- As close members get genetic test results you can start sharing with more extended relatives.
- For example, if a parent tests positive for the mutation you can then share with their siblings and parents
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What information should you share with your family members?
| - Your test results
- Information on the gene mutation you carry
- Information on cancer risks, risk reduction options, and screening options
- Share your experience
- Your genetic counselor can provide a letter or handout you can use to share information
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How should you talk with your family?
Where should you start?
| - Think about how your family typically shares health information.
- Do you prefer phone, text, email, Facebook?
- Use whatever form of communication is most comfortable for you.
- Consider the typical patterns of communication in your family.
- Is there one relative who tends to be the "keeper of information"?
- Are there specific family dynamics you need to take into account?
- For example, could you start by sharing with a sister who could then share with other relatives?
- Would it be more helpful to share in a group versus individual setting
- Feel free to refer your family to your genetic counselor, handouts, or websites for more information
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What emotions do people often feel when going through this process?
| - Insecurity on how to discuss this information with your relatives
- Uncertainty about risks and information
- Concern that family may not want the information or concern you may cause extra worry for family
- Worry you will harm family relationships
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What steps can you take to start sharing with your family?
| - Identify family members who will benefit from the results
- Consider how you want to communicate with them
- Choose appropriate setting
- Start by asking how much people already know about the family history, genetics, etc
- Ask how much people want to know
- Share genetic test results and risk information
- Respond to feelings that may be expressed
- Give family members follow through options and resources
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Have any tips about this process?
| - Think of family communications about hereditary risks as a process. Not everything needs to be discussed at once.
- It doesn't need to go perfectly!
- Think about what you want to say before saying it. Practice it.
- Seek information for yourself prior to sharing it.
- Use resources your genetic counselor gave you to help you share
- Ask for help from your genetic counselor or a family member with whom you feel comfortable
- Don't be afraid to say you don't know something. Share your genetic counselors contact information for family members to contact directly with questions
- Family members will respond differently, some want a lot and some want little.
- People will make their own decisions. Meet people where they are in the process
- Your family members may use your reactions and emotions as a model for their own. Consider waiting until you are ready to discuss the information calmly
| Are there more resources for you?
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