Genetic counseling (cancer)

If you or a close relative has had cancer, you may be concerned about your risk of getting cancer in the future and want to know what you can do to reduce that risk. You may also wonder if your children or other relatives are at risk. 

In this situation, genetic counseling can help answer your questions. This is a form of counseling that supports and informs people who may be at increased risk of developing certain types of cancers. During genetic counseling, your genetic counselor will: 

• educate about cancers that run in families (known as “inherited” or “hereditary” cancer) 

• interpret your personal and family history, as hereditary cancer risk is considered 

• talk about cancer risks, screening and prevention for you and your family  

• help you understand if genetic testing will help clarify your risk, and if so, explain the process so you can make an informed decision about proceeding 

You may benefit from genetic counseling if you or a close relative had any of these: 

• breast cancer at age 50 or younger  

• breast cancer at any age with Jewish ancestry 

• ovarian cancer at any age 

• colorectal cancer at younger than age 50 

• similar types of cancer in several relatives (in either your mother’s family or father’s family)  

• more than 10 precancerous colon polyps during your lifetime 

• more than one type of cancer 

If you or any of your family have or had any of the above, talk with your health care provider about genetic counseling. Keep in mind the list above is only a small list of diagnoses, which should prompt genetic counseling. Many experts recommend that an even broader group of people should actually be referred for genetic counseling, so if you do not fit into one of the groups above, but you are worried about your risk, genetic counseling is still likely right for you.

Genetic testing is a type of testing that looks for mutations or variations at the DNA level. This type of testing can help determine your risk level for certain types of cancer. However, not everyone with a personal or family history of cancer will benefit from a genetic test. Meeting with a genetic counselor does not mean that you will have a genetic test. You will learn more about the testing options and if they are right for you. 

Not all genes linked to cancer risk have been identified. Before you have a genetic test, you want to know: 

• that the correct test is being done 

• how valid the test results are 

• what your next steps are when you receive the results (positive or negative) 

A genetic counselor will help answer these questions and help you make decisions that are right for you. 

Genetic testing is usually done with a blood or saliva sample.   Your genetic counselor will work with you to explain the specifics of the testing process.

Genetic counseling can be complicated. Watch this video to get answers to common questions and learn how our experts will navigate your care.

When preparing to see your genetic counselor, the best thing you can do is prepare your questions in advance. These may be questions such as: 

• What is my risk of getting cancer based on my family history? 

• If I have a family member with a certain type of cancer, will I get it? 

• If I have cancer, are my family members at risk of getting it? 

• Should I get genetic testing? 

• What can I learn from genetic testing? 

• What support resources about genetic counseling and testing are available to help me? 

• Whom should I call if I have questions after I leave the office? 

Also remember that your personal and family cancer history is important to your risk assessment, so try to have as much information on these details as possible.  We know that not everyone will have complete information, but anything you can tell your genetic counselor about your history will add to your assessment. 

In most cases, both the genetic counseling visit and genetic testing are covered by insurance. However, coverage will depend on your individual plan. Speak with your health insurance provider before your genetic counseling appointment to be certain of what is covered. Costs and coverage for genetic testing will be explained at the time of genetic counseling, and in most cases, the genetic testing lab can help provide more information about out-of-pocket costs for the test. 

• I don’t have a family history, so genetics cannot play a role in my cancer: Even if you do not have a known family history of cancer, genetics may still play a role in developing cancer. This will depend on your age and the type of cancer. For example, current guidelines suggest that any person with certain types of cancer, even if they have no family history of cancer at all (including, but not limited to ovarian, pancreatic or breast cancer at age 45 or younger) should be offered testing.   

• I have a family history of cancer, so I or my children must be high-risk: It is perfectly natural to worry about your risk or your children’s risk of cancer if you have a close family member with cancer. However, having a close relative with cancer does not necessarily mean you or your children are at high risk of getting it. In fact, most cancers actually are not hereditary. If you have concerns, you can speak with a genetic counselor. 

• I don’t want genetic testing, so I will avoid genetic counseling: Genetic counseling is not the same as genetic testing. With a genetic counselor, you will discuss your personal and family history, determine your risk of cancer and develop a prevention and management plan that is unique to you. Your genetic counselor may or may not recommended genetic testing, and even if it is recommended, you may accept or decline. 

• I will lose my insurance if I get genetic counseling or have an abnormal (positive) genetic test result: Chances are, what you have shared with your health care providers is already in your insurance file. Information learned from genetic testing is protected by law, and health insurers are not allowed to alter your eligibility or rates based on the results of a genetic test. Your genetic counselor can provide you with information on the 2008 Genetic Information Non-discrimination Act and any state laws that protect you. 

• My insurance will not cover a genetic test: Some insurers may not cover a genetic test, but most will, provided the correct test for you is ordered by your health care provider. Additionally, even if your insurance will not cover the test, a patient assistance program or rather low self-pay option may be available. Specifics can be discussed in the context of your genetic counseling visit.  

• My genetic test was normal, so my relatives are safe: Not all genes that cause cancer have been identified, and other shared non-hereditary risks may be present as well, so even if your genetic test results are normal, you and your family members could still be at a high risk for cancer. This is why your genetic counselor uses genetic test results (if available) as well as your clinical personal and family history to provide a risk assessment. 

• I had a positive genetic test, so I will get cancer: If your genetic test comes back positive, showing a gene mutation, it only means you are at higher risk of getting certain types of cancer. Getting this cancer is not guaranteed, and the information allows you access to early screening and helps you take steps to prevent cancer.  

• Anyone who wants to know their risk level should get a genetic test: Genetic testing is not the only factor in determining your risk for cancer. Genetic testing holds the most value for people with a personal or family history of certain types of cancer, whose cancer is diagnosed at a certain age or are from a specific ethnic background. If you have no personal or family history of cancer, you probably do not need genetic testing. A genetic counselor can help you decide. 

• Every form of cancer can be inherited: Even though 20 to 30 percent of cancers occur in family clusters, this is not only due to genetics. Chance can play a role, as can environmental factors and similar lifestyles. Just 5 to 10 percent of cancers are believed to be inherited. You can seek genetic counseling if you need help determining what is causing cancer in your family. 

• There are only genes for breast cancer: In addition to breast cancer genes, there are genes associated with colorectal cancer, stomach cancer, ovarian cancer, uterine cancer, and some rare forms of cancer. Some genetic changes result in higher risk than others and a genetic counselor can help you determine your level of risk and whether genetic testing is right for you.