Your Genetic Counseling Appointment: How To Prepare For It, And What To Expect
Genetic counseling is a conversation and opportunity to learn more. You can get more out of your genetic counseling appointment if you collect as much information as possible about your family's cancer history beforehand, if possible. Helpful information includes:
Your medical records. This includes doctors' notes and pathology reports. If you are seeing a genetic counselor at the same hospital where you are/were treated, the genetic counselor should usually have access to this information.
Your family members. This includes each person's current age or age at the time of death, and cause of death. This list should include blood relatives only (parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins) on both sides of your family.
Cancer in your family members. This should include the age at which family members were first diagnosed with cancer. Pathology reports are often helpful. If you aren't aware of the details of your family history, it could be helpful for you to ask your family members questions and complete a family history questionnaire before your visit, to make sure the genetic counselor's review and assessment of the information you provide is accurate.
Although having these details is very helpful, it is not necessary. You should not avoid genetic counseling or be worried about having a useful appointment just because you do not know a lot about your family history.
When going to the appointment, consider taking someone with you. This may or may not be a family member, depending on your preference. The genetic counselor will discuss a lot of information, and it can help to have someone else listening with you as well. A genetic counseling appointment can take as little as 30 minutes, to more than an hour and a half. Another person can help you listen and think of questions. If you choose to bring a family member, that person may also be able to provide information about your family history.
The following topics will usually be covered during your appointment with a genetic counselor:
- Your personal medical history and cancer screening history
- Your family history of cancer
- The possibility of an inherited cancer risk. Depending on your family history, your genetic counselor may be able to use computerized tools to help estimate your risk.
- The risks, benefits, and limitations (pros/cons) of genetic testing for you and/or your family
- A strategy for genetic testing that best meets your needs
- Thoughts on medical screening that may be helpful for you/your family (to review with your healthcare provider)
- Current laws regarding the privacy of genetic information
- Helpful resources for you to find support or learn more
How do I find a genetic counselor in my area?
Use the NSGC's "Find a Genetic Counselor" feature to locate a genetic counselor near you.
National Society of Genetic Counselors
The National Society of Genetic Counselors (NSGC) is the leading voice for genetic counselors. It promotes the professional interests of genetic counselors and provides a network for professional communication.
Canadian Association of Genetic Counsellors
CAGC can provide information about the benefits of genetic counseling and help you find a local genetics clinic to access a genetic counselor in Canada.