What to Expect When Meeting With a Genetic Counselor

Approved by the Cancer.Net Editorial Board, 01/2015

Key Messages:

  • Genetic counselors are specially trained to advise you and your family on identifying and managing inherited cancer risk.
  • Information about your family’s cancer history can help your genetic counselor guide you more effectively. 
  • A genetic counselor can work with you and your doctor to coordinate genetic testing and explain the results.
  • Resources are available to help you find a genetic counselor in your area.

Genetic counseling for cancer involves having a trained genetic counselor help you and your family understand your inherited cancer risk. Inherited cancer risk may be passed from parent to child. The genetic counselor explains available genetic tests. He or she can also offer information about cancer screening, prevention, and treatment options and provide support.

A genetic counselor’s training and certification

A genetic counselor is a health professional with specialized training in medical genetics and counseling. Most genetic counselors have a Master's degree in genetic counseling. Some have degrees in related fields, such as nursing or social work. Genetic counselors are certified through the American Board of Genetic Counseling. They are often licensed by their state. Like other health professionals, they must participate in continuing education to maintain their certification.

The role of a genetic counselor

Genetic counselors are trained to advise you about:

  • Your risk of developing specific types of cancer, based on your family history
  • The availability of genetic tests than can give you more information about your risk of these types of cancer
  • Testing procedure limitations and accuracy of genetic tests
  • Emotional, psychological, and social consequences of knowing the test results
  • Cancer screening and surveillance options
  • Preventive measures
  • Diagnostic and treatment options
  • The privacy of your genetic information

Preparing for an appointment with a genetic counselor

You can get more about of your genetic counseling appointment if you have more information about your family’s cancer history. Helpful information that may be requested by the genetic counselor includes:

  • Your medical records. This includes doctors' notes and pathology reports. Pathology reports are your laboratory test results from any biopsies, surgeries, or screening examinations, such as colonoscopies.
  • A list of family members that includes each person’s current age or age at the time of death and cause of death. This list should include parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins.
  • Information on specific types of cancer that have been diagnosed in the family. This should include the age at which family members were diagnosed with cancer. Pathology reports are often helpful.

Although having this information is very helpful, it is not necessary. You should not avoid genetic counseling 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. 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.

What to expect during the appointment

The following topics will be covered during your appointment with a genetic counselor:

  • Your personal medical history and cancer screening history
  • Your family history of cancer. The counselor will draw your family tree and include at least three generations, documenting which family members have had cancer, what type of cancer they had, and their age at diagnosis.
  • The possibility of an inherited cancer risk. Depending on your family history, your counselor may be able to use computerized risk assessment tools to help estimate your risk.
  • The benefits and limitations of genetic testing for you and your family
  • A strategy for genetic testing that best meets your needs
  • Current laws regarding the privacy of genetic information

What to expect after the appointment

Your genetic counselor will typically write a summary of your appointment. Usually, a copy of this report will go to you and to the doctor who referred you to the genetic counselor. Your genetic counselor may also provide you with written information relevant to your family history. In some situations, you or other family members may qualify for research or screening studies. Your genetic counselor can provide you with information about those studies and help you make the necessary arrangements.

If you choose genetic testing, your counselor can help you coordinate the details, including working with the testing laboratory to find out if insurance pays for the costs of the test. When the test results are available, your counselor can review them with you and help you understand them.

In the long term, your genetic counselor will continue to be a resource for you and your family. It is important to call your counselor if you have any questions or if changes occur in the cancer history of your family.

Finding a genetic counselor

To find a genetic counselor in your area, ask your doctor for references or search the National Society of Genetic Counselors and National Cancer Institute databases.

More Information

Genetic Testing

Sharing Genetic Test Results With Your Family

Understanding Cancer Risk