Sharing your genetic test results with family

Though genetic testing is highly personal, it may be important to you or your family to share what you’ve learned from your results. Communicating such important and sensitive information can be stressful, but it can also offer you relief by sharing your burden. If you tested positive, telling family members who may also carry the mutation can be empowering.

Talking with your spouse or partner

If you’re in an intimate relationship, you likely share many of the experiences of breast cancer diagnosis, treatment and genetic testing with your partner. Be sensitive to your partner’s concerns while you share your own. Invite your partner to appointments with you to take notes, support you and learn along the way.

If your partner feels overwhelmed or anxious, he or she may wish to seek individual emotional support , whether through private therapy, your religious community or elsewhere.

Talking with children

If you carry a gene mutation, you have a 50 percent chance of passing it on to your children. Your children—sons as well as daughters—may want to consider genetic testing, too.

National guidelines recommend that high-risk screening begin between the ages of 25 and 35. Still, some young adults may choose to test as young as age 18. Your genetic counselor can schedule a time to meet with you and your adult children to talk about their risk, or schedule individual appointments for each adult.

It’s possible your children will be uncomfortable talking about testing or unwilling to be tested. As a parent, that may distress or even anger you. You want the best for your children, and you want them to understand how their family background may impact their health.

Everyone processes things differently. Like you, your children may need time to consider the risks and benefits of knowing if they carry a gene mutation. They may choose not to have testing done now but change their minds later. One way to be there for your children is to give them as much information about genetic risk and breast cancer as you can, and leave it with them to think about.

If you have very young children, you may not need to tell them about the gene mutation until they are older. Preteens, teenagers and young adults who have seen you go through cancer treatment will likely have questions about your test results and how it might impact them.

If your young adult or adult children have many questions, it may be a good idea to take them with you to a genetic counselor. There they can learn about when to start screening and testing.

Talking with immediate family

Your siblings, parents, aunts, uncles and cousins are all potential carriers of gene mutations if you test positive.

Depending on your family, discussing your results may be easy or difficult. If you have many distant relatives or don’t know some relatives well, communication can be more challenging.

The first step may be asking your family if they want to know your results. Even if you would choose differently, it’s important to respect the choices your family members make. Some may not want to know. Be sensitive to their feelings.

For those family members who are interested, preparing a list of useful information may make talking with them easier. Offer the basic facts of your results and what those results mean for each of them. Provide the name of your or other nearby genetic counselors.

In some cases, you may want to tell relatives who live far away or who you don’t know well. Talking by phone may not be an option or could be uncomfortable. It’s OK to tell your relatives about your results by letter or email. Be sure to ask first if the information is something they want. Genetic counselors and social workers are good resources for communicating with family.