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National Society of Genetic Counselors; Genetic Alliance. Making Sense of Your Genes: A Guide to Genetic Counselling. Washington (DC): Genetic Alliance; 2008.

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Making Sense of Your Genes: A Guide to Genetic Counselling.

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Cancer genetic counseling

Why see a cancer genetic counselor?

Some kinds of cancers run in families. If you have had cancer at a young age, had two or more separate cancers, or have several family members that have had cancer, you may want to think about genetic counseling and perhaps genetic testing.

A cancer genetic counselor will evaluate your family health history and talk about risks for inherited cancer, as well as screening and management for those at increased risk. If genetic testing is available, the counselor will tell you about the tests and help you decide if testing would be useful to you.

If you have had cancer, genetic testing may be useful to you and your medical team for making decisions about cancer management.

If you have not had cancer, it can help you understand your risk for cancer and the risks for other members of the family.

In both cases, genetic testing may help you and your medical team make decisions about cancer screening and cancer prevention methods. It could also provide useful information for your family members about their cancer risks.

A genetic counselor can also refer you to support resources for people with cancer, an increased chance of cancer, or family histories of cancer.

What can I do to prepare for my appointment?

The counselor will ask you questions about your family’s health history and your medical history. Here is some information that will help the genetic counselor work with you:

  • S/he will ask about your own cancer experience, including type(s), part of the body affected, and age of diagnosis. To better understand your cancer history, the counselor is likely to ask for access to your medical records. You should bring any medical records or pathology reports related to your or your family’s cancers or cancer treatment, if possible.
  • Have any other members of your family had cancer, and what type of cancer did they have? Different types of cancer can run together in families.
  • What was the age of diagnosis for members of the family with cancer? Generally, the younger a person is when a cancer occurs, the more likely s/he is to have a form of cancer that can run in the family.
  • It may also be helpful to talk with your family about possible genetic tests.

Although testing is an individual decision, the tests can have consequences for members of your family that do not have cancer. For example, a test result might mean that some relatives have a higher risk for cancer than others.

It might be useful for you to find out how your parents, siblings and children might feel about finding out information about inherited cancer risk.

Not all predispositions to cancer can be identified by a genetic test. Even if a genetic test is available for a certain type of cancer, genetic testing is not helpful for all individuals.

You might also want to contact your insurance carrier about whether or not genetic counseling and testing is covered under your policy. The counselor will have information about costs of the testing, but may not know what your insurance will cover. Often, the genetic counselor can work with you and your insurance provider to explain the medical importance of testing and determine your coverage before you go forward with testing.

What will happen during my appointment?

Every counselor has a different approach. But, in general, a few things will probably happen in the session.

  • The counselor will go over your family health history with you. Some counselors might get this information from you ahead of time, and some will take the history with you in the session. The counselor will ask you some questions about the health of your family members. This helps the counselor know what you might be at risk for, while using the information to create a family tree for your medical records.
  • The counselor will talk to you about any cancers that you might be at risk for and the associated cancer screenings that you should do. This can be very useful, even if you decide against testing or if no testing is available. It can give you a good idea of what sort of screenings you should be doing and what you can do to reduce your risk. If you are considered to be at high risk, the counselor may talk to you about prophylactic surgeries (done to prevent a cancer, rather than treat one).
  • If testing is available, the counselor will have information about cost and possible benefits and harms of the testing. The counselor will also help you explore what the results of testing will mean for you.
  • Cancer genetic testing is different from some other types of testing because a positive test result does not always mean that you will get cancer. If you test positive for a variation in a cancer gene, it means you are more likely to get cancer.
  • Not all types of cancer are the same—different genetic tests mean different risks for different types of cancer.
  • If you decide to have a genetic test, the counselor will help you arrange for the testing. S/he will also receive the results of the test and will contact you to explain your test results.
  • Depending on the counselor or institution, results may only be given out at another in-person meeting. Some counselors or institutions will give results over the phone.
  • The counselor will also talk about the meaning of the results with you, help you plan to talk about the results with family members, and share the results with your medical team.
Copyright © 2008, Genetic Alliance.

All Genetic Alliance content, except where otherwise noted, is licensed under a Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Bookshelf ID: NBK115516

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