What is a genetic counselor and what is cancer genetic counseling?

A genetic counselor is a healthcare professional with very specialized training in medical genetics and counseling.  Genetic counselors are trained to evaluate the likelihood of a hereditary cancer risk in your family and provide information about genetic testing and other cancer screening options. They will help you come to a decision about genetic testing and serve as a resource for you and your family in the future.

Genetic counselors may advise you about the following:

• Information about cancer detection, screening, and prevention
• The benefits, limitations, and risks with hereditary cancer genetic testing
• The privacy and confidentiality of your genetic information
• The emotional, psychological, and social consequences of knowing the test results

Cancer genetic counseling involves an appointment with a genetic counselor to help an individual and/or family understand the medical facts and available screening, prevention, and risk-reducing approaches. In addition, the genetic counselor can review your options for genetic testing and cancer screening.

Why would my health care provider refer me for genetic counseling?

If one or more of the following is true:

• Cancer was diagnosed at a young age (usually at or under age 50)
• Cancer was diagnosed in more than one location (i.e. bilateral breast cancer)
• A close family member was found to have cancer at a young age
• Related cancer occurs in multiple family members, and on the same side of the family
• The person with a higher chance of carrying a genetic predisposition based on ethnicity, such as Ashkenazi/Eastern European Jewish ancestry
• A specific cancer diagnosis was identified (ex. male breast, pancreatic, ovarian, or metastatic prostate)

What is hereditary cancer genetic testing?

About 5-10% of cancer is hereditary and passed through families. A genetic counselor can provide a detailed risk assessment based on your personal and family history. After reviewing this history, he or she may recommend genetic testing for one or more cancer predispositions. This test is generally performed on a blood sample and it looks for changes (called mutations) that are found in genes linked to a higher chance of developing cancer. If you are found to carry a mutation in any of these genes, your healthcare team will work together to form a more personalized treatment, management, and/or screening plan.

How can genetic testing help me and my family?

Knowing if there is an inherited factor for cancer in your family might help guide your medical care.  It might also help guide the medical care of your relatives.  If there is an inherited factor for cancer in your family, doctors and other healthcare providers can suggest steps you (or your relatives) can take to reduce the likelihood you will develop a cancer, or to catch a cancer at an earlier stage, when it’s more easily treated.

What are the benefits of genetic testing for individuals already diagnosed with cancer?

• It can help women diagnosed with breast cancer make surgical decisions (lumpectomy vs. mastectomy).
• It can assist people diagnosed with cancer with decisions about treatment.
• It can help people already diagnosed with cancer understand if their risk is higher for additional cancers.
• It can help family members who have not had cancer better understand their risk for cancer. 

Benefits of genetic testing for people who have not been diagnosed with cancer

• It can help people better understand and manage their cancer risk, including changes in screening and surveillance, and considering risk-reducing strategies.

Limitations of genetic testing

• Test results can be "uncertain", which do not provide any additional information about a family's cancer risk.
• Not everyone meets the specific criteria for genetic testing.

My health care provider referred me for genetic counseling and genetic testing. What happens next?

The Lynchburg Hematology and Oncology (LHO) scheduling team will contact you to schedule an appointment with the cancer genetic counselor. The appointment will take place at the LHO office, located at the Pearson Cancer Center.

How long does a genetic counseling appointment last?

Most appointments last about 45-60 minutes. The amount of time depends on an individual’s specific history.

What questions will the genetic counselor ask me?

The genetic counselor asks about your medical history and your family's medical history to help provide you with information about your cancer risk based on this information.

He or she will ask about your family members, including the following:

• The approximate ages of your relatives who are still living
• How old your relatives lived to be if they are no longer alive
• If your relatives had cancer
• What types of cancer your relative had (where in the body the cancer started), and;
• How old relatives were when their cancer was diagnosed

What if I don’t have all the family history information?

If you don’t have this information, but have another family member you can ask, please do!  We encourage you to ask them before you meet with the genetic counselor, if possible. If you were adopted, or don’t know much about your family history, don’t worry, just bring what information you have available.

How much does the genetic counseling appointment cost?  What about the genetic testing? Is it covered by my insurance?

While many private insurance companies will cover the cost of genetic counseling, not all plans do, and some may have associated co-pays or co-insurances which apply. 

Every insurance company has different requirements regarding the coverage for genetic testing.  The average cost for most patients is less than $100, and the majority of patients pay $0. The genetic counselor that you meet with will be able to better address this consideration after reviewing your personal and family histories of cancer. 

Can I have the genetic testing on the same day as my genetic counseling appointment? 

Most of the time, we can draw blood for genetic testing the same day of your appointment. 

How long does it take to receive the results?

The results are generally received within 10-14 days. When the test results are available, your genetic counselor will review them with you and help you understand the medical, psychological and social consequences of knowing the test results. The genetic counselor will write a summary letter reviewing the discussion and outcomes. Copies of this letter will be given to you and to the medical provider who referred you for counseling.

Can I bring a friend or family member with me?

Absolutely.  Many patients find that "another set of ears" during the visit is helpful.  Therefore, you are encouraged to bring a family member or friend with you when you come.