Get the Facts About Genetic Counseling

Although only five to ten percent of cancers are considered to be hereditary, pancreatic cancer is one of the few cancers that is being investigated for familial patterns. The main gene responsible for hereditary pancreatic cancer has not been discovered, but several genes are emerging that play roles in the development of pancreatic cancer in some families. This fact can be quite disconcerting for someone who has had family members diagnosed with this disease. Whereas there are no early detection methods for pancreatic cancer, there are some early risk detection methods. These emerging techniques can have substantial benefits for someone who may be at a higher risk of developing this cancer. Genetic counseling is one way of determining and evaluating that risk.

Genetic counselors are individuals trained in the scientific, medical and emotional aspects of inherited disease. An oncology genetic counselor specializes in counseling and educating individuals with cancer and/or family members who may be at increased risk of developing cancer. How do you know if you should consult with a genetic counselor? In terms of pancreatic cancer, a consultation with a genetic counselor should be considered if you or a family member(s) has one or more of the following:

     •  Multiple family members in the same or successive generations

        who have been diagnosed with pancreatic cancer

     •  Pancreatic cancer in two or more generations of the family

     •  Early onset of pancreatic cancer (less than 50 years old)

     •  Diagnosis of more than one primary cancer in the same person

If you determine that genetic counseling is right for you, you must then begin to think about what information you will need to collect in order to have an accurate and comprehensive consultation. Generally, you will need to know about serious illnesses, birth defects and inherited disorders for yourself and three generations before you. If the relative has or had cancer, find out at what age it was diagnosed. If the relative is deceased, ask about the age and exact cause of death. It is important to be as certain as possible about the types of cancer that relatives have had. Even though your primary concern may be pancreatic cancer, you must still report all other cancers that have occurred within your immediate family. Furthermore, it is critical to do your best to discern primary cancer sites from metastatic sites. Primary cancer is the site where the cancer originates, or where the cancer started. Metastatic sites refer to the locations to which the disease has spread. Obtaining pathology reports about the family member's cancer can help both you and the genetic counselor to verify this information. Most likely, you will also need to enlist the help of other family members in this information gathering process.

Once you have collected family history and your own medical records, you will most likely attend an in-person consultation with the genetic counselor. You may want to bring a friend or family member for support or to write down any important information that you may have missed. During your consultation, three main areas are usually discussed: 1) overall cancer risk assessment, 2) hereditary risk assessment and 3) options for medical and/or lifestyle management.

The assessment of your risk can only be determined after the genetic counselor has developed an accurate pedigree. At minimum, a pedigree includes first-degree relatives (parents, siblings and children), second-degree relatives (aunts, uncles and grandparents) and third-degree relatives (first-cousins). You may need to obtain medical records for some relatives in order to ensure that the medical information is accurate.

Once the pedigree is completed and verified, the genetic counselor will help determine if it is worthwhile for you to have genetic and/or medical tests performed. These tests can range from blood tests to skin biopsies. It is important to recognize that the costs of these tests may not be covered by insurance. However, genetic counselors can act as advocates on your behalf, by communicating directly with your insurance company about the importance of genetic counseling and helping to get your genetic testing covered.

After records are collected and genetic tests are completed, the genetic counselor may be able to determine the existence or degree of one's risk for developing a genetic disease, or in this case, pancreatic cancer. The pedigree can also be used to estimate the risk that other relatives face. You will most likely have a second in-person meeting with your counselor to obtain your results and discuss options for medical and/or lifestyle management and screening options for your family. Thus, often the biggest challenge of genetic counseling is helping families cope with the potential psychological, medical, and economic implications of the disease. Genetic counselors can help families cope with the many ramifications of genetic testing and may refer some families or individuals to psychologists who specialize in this type of counseling. Unlike most healthcare professionals, for the genetic counselor, the family is the patient.

The decision to consult with a genetic counselor is a very personal one and should not be made without considering the complex medical, psychosocial and family issues associated with it. It is also very important to note that genetic counseling does not commit you to genetic testing. It is simply a way to better understand your cancer risk and associated management options.

Finding a Genetic Counselor

There are several ways to find a genetic counselor in your area. You can contact your local cancer center directly and ask to be connected with the cancer genetics department. Or, you can contact the National Society of Genetic Counselors (NSGC) at 610-872-7608 or www.nsgc.org . On the website, there is an option to "find a counselor". From there, you can search by city, state, and specialty (type of cancer) or zip code and specialty.

Cost and Insurance Issues

The cost for a genetic counseling session ranges from 50 to 500 dollars, depending upon the extent of the visit. Typically, this will be covered by insurance. The genetic tests that may accompany the consult also have a fee. These tests may not be covered by insurance. Depending on the gene being tested, the fees for the tests can range from 50 to several thousand dollars. One of the functions of a genetic counselor is to act as an advocate on your behalf. He/she will inform your insurance company about the importance of genetic counseling and assist with getting the testing covered.

Insurance companies should not revoke your coverage if they find you have a high risk of developing pancreatic cancer or another genetic disease. However, your premiums could potentially be increased, depending upon the type of insurance. Laws are in place to prevent many forms of genetic discrimination, but the extent of protection varies from state to state. Before undergoing any type of genetic testing, a genetic counselor should discuss with you the risks of, and safeguards against, genetic discrimination.

Resources

National Society of Genetic Counselors  www.nsgc.org   610-872-7608

Special thanks to genetic counselor Jennifer Axilbund, M.S., C.G.C. for her time and contributions to this column. Ms. Axilbund is part of the National Familial Pancreas Tumor Registry and Cancer Risk Assessment Program at the Johns Hopkins University Hospital.