Genetic counseling

Genetic counseling is the process of meeting with a genetic counselor to discuss your family health history and whether genetic testing is right for you. A genetic counselor is a healthcare provider trained to weigh the risks and benefits of genetic testing and to educate you about your genetic test results.

If you go to a genetic counselor, you are not required to have genetic testing. The goal of genetic counseling is to help you understand your risk and decide if testing is right for you.

When you first meet with a genetic counselor, your discussions will focus on your and your family’s health and cancer histories. Your counselor will use this information to help you decide whether to get genetic testing.

What to expect

During the first appointment, your counselor will ask for details about your diagnosis, such as the breast cancer’s type and how old you were at the time of diagnosis. He or she may also ask you to list any other major medical conditions you have now or had in the past.

Then, your counselor will create a family tree, also called a pedigree. It will list all your relatives through three or four generations, or everyone in your family from your children through your grandparents, including aunts, uncles and cousins. For each person you list, the counselor will want to know whether he or she had any cancer.

If the person did, the counselor will want to know:

• What type of cancer the person had
• How old the person was at diagnosis
• How long the person lived and the cause of death, if the person died

You may find it hard to collect medical information on all your relatives, especially if you are not in touch with your family or don’t know your biological family. It’s OK if you can only give parts of someone’s cancer or health history. Try to find as much information as you can before your first appointment, search for medical records, or talk with family members you are in touch with. The genetic counselor will work with what you have to evaluate your risk as best as possible.

For some women, preparing for the first appointment may be overwhelming. If you begin to feel stressed or anxious, consider asking a close friend or family member to help you pull together the information you need. Many women also ask someone to come to the appointment with them to take notes or give support.

What if a genetic counselor isn't available?

Most major cancer centers and large hospitals have genetic counselors available. If not, your oncologist or another member of your healthcare team may be able to recommend one to you.

Those living in rural areas or away from large hospitals may have less access to genetic counselors. Try not to worry if this is true for you; you can still have genetic testing. One of your doctors may have experience with genetic testing and be able to order the test and interpret its results for you.

If you can’t find a genetic counselor, or if traveling for counseling may be difficult, you can access services online and by phone. These may be covered by your health insurance. The process is the same as it would be in person, but you will talk with the counselor via an online chat or over the phone. You will still need to visit a clinic to have your blood or saliva taken to a lab, if you choose to have testing.

Making a decision about testing

After the genetic counselor considers your medical and family history, you will discuss the pros and cons of getting genetic testing.

Everyone handles results differently, so any result may affect you differently than someone else. Whether you’ve already been through treatment may influence what your test results mean to you.

Important points to keep in mind when deciding whether to have testing include:

• Whether the test results will provide information that you can act on and that changes your medical care
• The chance of getting unclear results
• The usefulness of a positive result if little is known about hereditary cancer risk

Choosing not to test

You may decide after meeting with a genetic counselor that you don’t want to have genetic testing. This is OK. Women choose not to be tested for many reasons, and all of those reasons are personal.

It may be that juggling treatment with genetic testing is too overwhelming. Or, you may not want to think about the risk of future breast or other cancers before you’ve handled the first. Your financial, family or relationship status may also play a part in deciding not to test.

Choosing not to test doesn’t mean you can’t test later. If you are unsure, it’s OK to wait.