Hereditary Colon Cancer Takes Guts

Communicating Your Results with Family

Development of this resource was generously supported by Myriad Genetics. 

A hereditary colon cancer diagnosis means that you have a mutation in one of your genes that causes a specific hereditary colon cancer syndrome. Finding out that you are positive for a hereditary colon cancer syndrome can be life saving information for your family members. If your relatives are aware that there is a genetic mutation in the family, they have the opportunity to see if they also carry the genetic mutation. This knowledge allows them to take steps that will reduce their cancer risk.

 

As we know, family dynamics and the complexity of genetic information can make it hard to share genetic information. Kintalk offers these tips for communicating genetic information:

 

1. Dealing with your emotions and feelings of sharing "Bad News" 

 

Some people don’t share their diagnosis because they don’t want to be the bearer of bad news. Please remember that while talking about cancer risk can be an uncomfortable conversation, you are sharing information that may help your relatives prevent or detect cancer at an early and treatable stage. You may be just be saving their lives by sharing this information.

 

2. Know what you need to share with your relatives:

 

• Genetic test results and/or clinical diagnosis (this is the most important piece of information to share)

 

• Your genetics professional’s note explaining the results and next steps for you and your family

 

• Family tree

 

• Screening recommendations

 

• Family letter explaining the situation and what it means for them. 

 

• Click here for a sample family letter to share polyposis FAP/AFAP results with your family. 

• Click here for a sample family letter to share Lynch Syndrome results with your family.

 

3. Ways to communicate the information

 

You can communicate your diagnosis with your family members via: mail, email, or telephone. If you don’t have your relatives' contact information, ask another relative to see if they have it or know someone who does. Social media, like Facebook, is another great way to find relatives.

 

"How to Discuss Genetic Diagnosis with Your Loved Ones," from Global Genes is a great resource for both understanding and talking about genetic conditions.

 

For those with Lynch Syndrome, Kintalk.org is another option. They provide a secure website for sharing this information in case you would prefer not to send it over general email.

 

4. Reminder: You don’t have to be an expert to share the information

 

Hereditary colon cancer syndromes are complex and can be hard to explain. It’s important to remember that you don’t have to know all the information. There are experts who can help answer your relatives’ questions.

 

Online resources can be another option however, it’s important to make sure you are reading credible resources. Just because it’s on the internet does not make it accurate. Information from hospitals websites tend to be correct, including Kintalk.org.

 

For more information on family communication, see National Cancer Institute or Facing Our Risk.  

 

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 advice do others have for discussing hereditary colon cancer with children?

 

 

Information used in the development of this page was sourced from the NSGC and KinTalk, a service of the University of California, San Francisco and reviewed by the Foundation's Patient Education Committee.

1