As a genetic counselor specializing in cancer genetics for 20 years, I’m often asked how to talk with your relatives about cancer and what information is useful to share and collect.
First and foremost, you have an important perspective to share with family.
While you have battled cancer, you became the family history for your relatives. In some cases, your cancer may suggest that relatives should be alert at a younger age or consider risk reduction options. Their health history also may affect your treatment and recovery.
You can help protect each other’s health, and a genetic counselor is a valuable resource to help do that. We can review your family health history and determine the chances of developing cancer. A genetic counselor can also help you decide if genetic testing would be useful for your family.
How do I tell my family?
Your relatives need to know the kind of cancer you have and your age at diagnosis. You may consider providing other details regarding the kind of surgery and treatment you chose. If you have had genetic testing, it is very useful to share this information with your family members, regardless of the results. Not finding an inherited risk factor on genetic testing (negative test result) can be just as useful as finding an inherited risk (positive test result).
A good outreach step is a letter, and a genetic counselor can help you prepare one. The letter usually contains a brief overview of what’s known about the gene, the name of the mutation, and the name of the laboratory that did the testing. The letter can offer contact information for your genetic counselor, or relatives can go to FindaGeneticCounselor.org to find a nearby genetic counselor.
You want the letter to help your relatives understand why the genetic information could be important for them. That said, you don’t want to overwhelm them or provoke anxiety. I find enclosing a personal note and a copy of your test results with the genetic counselor’s letter is appreciated. By including a copy of your test results, your relative has all of the information he or she needs to seek testing.
Am I the bearer of bad news?
Definitely not! Openly sharing and discussing family health history and genetic testing can be an empowering gift for relatives. Often relatives were already wondering about cancer chances.
When an inherited risk factor is identified, it is possible for the number of cancers to decrease over the next generations if relatives know to start surveillance younger or opt for risk reduction measures.
While the news may be surprising at first, family members will benefit from the conversation.