Tips for Explaining Hereditary Colon Cancer

Syndromes to Children

Parents face many decisions after finding about about their genetic cancer risk. Perhaps one of the most difficult is whether to tell their children and how to approach the conversation.

 

Rule #1: Allow yourself some time to process the information and your emotional response before talking to your children. It is important to be calm and clear when you talk with them.

 

Rule #2: You know your children best. There are no set guidelines for talking to kids about health issues.

 

Including your children in important conversations shows your confidence in them that they can handle whatever comes their way.You and your spouse can decide on the best approach, though a timely (or untimely!) question from a child may can disrupt parents’ plans. Like other important conversations, spontaneous discussions can happen, and may feel like a more natural way for the topic to come up and be talked about. Talking about ‘family stuff’ is an ongoing process, not an event – it doesn’t have to happen all at once.

 

Something else to consider is whether you would like to speak with your children together or individually.

Genetic Counseling for Hereditary Colon Cancer Syndromes

Development of this resource was generously supported by Myriad Genetics. 

Child Friendly Resources

FAP & Me - A Kids Guide to Familial Adenomatous Polyposis (English)

 

Lynch Syndrome - A presentation for Children

Discussing Genetic Tests with Children

Andrea Patenaude, PhD, Cancer Genetics and Prevention Program Psychologist at Dana Farber Cancer Clinic, offers the following advice about discussing genetic testing with your children:

 

 

Why should I tell my children about the genetic test results?

 

  • Children pick up on conversations they overhear. By talking to them directly, it ensures they hear about it first, and fully, from you, and not from a snippet of conversation.

 

  • You are able to start the conversation about hereditary cancer in an honest and open way.

 

  • You can emphasize positive aspects of the test results; for example, test results provide information so we can take early steps to prevent or treat cancer.

 

  • It helps children understand what’s going on at home and plans you may be making.

 

  • It is an opportunity for you to find out if your children are thinking about cancer and allows you to answer any questions they may have.

 

 

How should I tell my children about the genetic test results?

 

  • Consider using simple language to describe the test so your children can understand the details. Emphasize that the result doesn’t mean you have cancer or will necessarily get cancer in the future. 

 

  • Similarly, make it clear that the result doesn’t mean they will have cancer or will necessarily get cancer in the future.

 

  • If you have had cancer, this may be a way to explain why you, or other family members developed cancer. 

 

  • Ask your children if they have any questions and let them know that you are always available to talk if they have questions later on. You can ask them to repeat what you said to reveal any misconceptions they have.

 

 

When should I tell my children about the genetic test results?

 

  • Roughly half of parents tell their minor children the result of their genetic testing within a month of receiving the test results, but do not feel pressure to tell your children if you do not think you or they are ready.

 

  • If you are not planning on talking to your children for a while, it might be a good idea to plan a specific time to talk to your child later, for example, when they reach a particular age or after a certain event, such as graduation.

 

  • When you are considering how to talk to your children about genetic test results, remember to take into account their age differences, maturity levels, emotions and how much each child knows about or wants to know about cancer.

 

FAQs

 

1. What happens during a genetic counseling appointment?

2. Will insurance cover the cost? What if I don't have insurance?

3. What is genetic testing? Do I need it?

4. If my doctor doesn't work with a genetic counselor, how can I get an appointment?

5. What's the best way to share my diagnosis with my relatives?

 

 

For more advice on sharing genetic testing with your children:

 

From Dana Farber Cancer Institute: Tips for Talking to Your Children About Genetic Test Results

 

From our Patient Survey: Advice from Parents

 

 

Information used in the development of this page was sourced from the from the Dana Farber Cancer Institute and reviewed by the Foundation's Patient Education Committee.