What is a genetic counselor?
A genetic counselor is someone who holds a graduate degree in medical genetics and counseling. These individuals are trained in the scientific, medical and emotional aspects of inherited disease. Genetic counselors work as part of the healthcare team. They mainly interact with patients and families that may be at high risk for hereditary diseases and disorders. 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. Unlike most healthcare professionals, for the genetic counselor, the family is the patient.
Genetics and Pancreatic Cancer
All cancers, including cancers of the pancreas, begin with a mutation in the DNA of one cell that causes the cell to grow and divide unchecked. In most incidences of pancreatic cancer, environmental factors, such as smoking, obesity and increased age, seem to cause the genetic mutations. But, in some cases, the mutated DNA is passed from generation to generation; these mutations may lead to hereditary (familial) pancreatic cancer. Only about 10% of pancreatic cancers are considered familial. If multiple first degree blood relatives have had pancreatic cancer, then the cancer may be considered familial, or inherited. First degree blood relatives include parents, children and siblings.
Pancreatic cancer is one of the few cancers under investigation for familial patterns. While researchers suspect several specific genes, the main gene responsible for hereditary pancreatic cancer remains unknown.
While no early detection methods exist for pancreatic cancer, there are ways to determine an individual’s risk of developing pancreatic cancer. These techniques can benefit someone who may be at higher risk. Genetic counseling is one way to determine and evaluate that risk.
What do genetic counselors do?
Genetic counselors help people identify and understand inherited diseases. They explain how an inherited genetic mutation may contribute to an increased frequency of a particular disease, such as pancreatic cancer. Genetic counselors:
- identify families at higher risk for pancreatic cancer and help those families interpret information about the disease.
- educate individuals and families about patterns of inheritance of pancreatic cancer.
- use medical histories to help families asses the chance that pancreatic cancer will occur again in their family.
- help individuals at higher risk for pancreatic cancer make informed choices for management and/or prevention.
If the information the genetic counselor provides is stressful, he/she may act as a support resource and an interpreter for the medical information.
Should I consult with a genetic counselor regarding pancreatic cancer?
Consider consulting a genetic counselor if at least one of the following bullet points describes either you or one or more family members:
- Multiple family members in the same or successive generations who have been diagnosed with pancreatic cancer
- Pancreatic cancer in two or more generations on the same side of the family
- Early onset of pancreatic cancer (younger than 50 years old)
- Diagnosis of more than one primary cancer in the same person
How do I prepare to meet with a genetic counselor?
If meeting with a genetic counselor is right for you, the next step is to collect the appropriate information in order to have an accurate and comprehensive consultation. The genetic counselor will need detailed information about your family medical history to understand the inheritance patterns. In general, you should provide the genetic counselor with the following information:
- Serious illnesses, birth defects and inherited disorders for yourself and three generations before you
- Relatives who have or had cancer and at what age it was diagnosed
- If a relative is deceased, the age and exact cause of death
It is important to be as certain as possible about the types of cancer that relatives have or had. Even though your primary concern may be pancreatic cancer, all cancers that have occurred in your immediate family are significant. In addition, do your best to determine primary cancer sites from metastatic sites. Primary cancer is the site where the cancer started. Metastatic sites are the locations to which the disease spread. For example, even if cancer is first detected in the liver, it may have spread there from the pancreas. In that case, the primary cancer is pancreatic cancer. Obtaining the family member’s pathology reports can help verify this information. Most likely, you will need to enlist the help of other family members in the information gathering process. Once you collect your family history and your own medical records, you will be well prepared for an in-person consultation with the genetic counselor.
What can I expect during my consultation?
During your consultation, three main topics are usually discussed:
- overall cancer risk assessment
- hereditary risk assessment
- options for medical and/or lifestyle management
In order to determine your overall cancer risk, the genetic counselor must first develop an accurate pedigree. A pedigree is a chart that shows your relation to relatives who are and are not affected by pancreatic and other cancers. See the example below. 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). The medical records you obtain for relatives affected by cancer ensure that the information used to build the pedigree is accurate.
Once the pedigree is completed and verified, the genetic counselor will help you determine if it is worthwhile to have genetic and/or medical tests performed. These tests can range from blood tests to skin biopsies.
What can I expect after genetic/medical tests are completed?
After records are collected and genetic tests are completed, the genetic counselor may be able to determine your relative risk for developing pancreatic cancer. The risk that other relatives face is estimated using the pedigree. 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. Genetic counselors will help you decide what options are right for you and your family. They will not tell you what decision to make.
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 results of genetic testing and may refer some families or individuals to psychologists who specialize in this type of counseling.
It sounds complicated. How can I remember all the details?
Genetic counselors usually have written information, such as brochures, to summarize technical information discussed during your session. You may want to bring along a friend or family member to your consultation. A second person can provide support and can write down any important information that you may otherwise miss. If any information is added to your medical records, request a copy of your records. While confidentiality is very important in genetic counseling, you have a right to know and understand your private information.
Will insurance cover genetic counseling or medical tests?
The cost for a genetic counseling session ranges from $125 to $500, depending upon the extent of the visit. While each individual insurance plan is different, this will typically be covered by insurance.
The genetic tests that may accompany the consult also have a fee. Depending on the gene being tested, the fees for the tests can range from 50 to several thousand dollars. These tests may or may not be covered by insurance. One of the functions of genetic counselors is to act as advocates on your behalf. They can communicate directly with your insurance company about the importance of genetic counseling and testing and assist with getting the testing covered.
In May 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into federal law. This law protects Americans against genetic discrimination with regards to health insurance and employment. As a result of this law, group and individual health insurance companies may not revoke your coverage or change contribution and premium amounts if they find you have a high risk of developing pancreatic cancer or another genetic disease.
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.
Or, contact one of our Patient Central Associates. Associates are available Monday – Friday, 7 a.m. – 5 p.m., Pacific Time.
National Society of Genetic Counselors, www.nsgc.org, 610-872-7608
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.