Who should consider genetic testing
It is recommended that all individuals with exocrine pancreatic cancer are offered genetic testing, according to the most recent National Comprehensive Cancer Network’s genetic testing guidelines.
Other indications for considering genetic testing include:
a close family history of pancreatic cancer
personal or family history of other cancers
specific cancers in individuals of Ashkenazi Jewish ancestry
Several pancreatic cancer susceptibility genes are associated with increased risks for other cancers, such as breast and ovarian cancer. Based on your personal and family history, your provider may refer you to a genetic counselor. If you’re unsure if genetic testing may be appropriate for you, speak with your healthcare provider.
The pancreatic cancer genetic counseling appointment
Genetic counselors are healthcare professionals with specialization in human genetics and counseling. Appointments with a genetic counselor range from 30 minutes to one hour and typically cover several topics.
During the appointment, the genetic counselor will go through your family and medical history relevant to pancreatic cancer and discuss the chance of your having inherited predisposition to cancer. The genetic counselor will also educate you on how or whether genetic testing can help establish your risk of cancer and guide treatment, screening, and prevention of cancer. They can also help you learn of the risk to your family members. Discussing these topics can involve strong emotions, and genetic counselors are trained to support you throughout the process.
If you choose to go forward with genetic testing, you will have a follow-up appointment or phone call with a genetic counselor once your results are ready. The genetic counselor will explain your results and their implications for your medical management, and any clarifications on family risk, as well as coordinate with any specialists involved in your care, such as your oncologist. They can also help you with how to discuss your test results with family members and provide other local and national resources.
Preparing for your appointment
To prepare for your appointment, it is helpful to gather certain medical information about you and your family. Gathering this information will help the genetic counselor give more precise information about your risks, but don’t avoid attending an appointment because some information is missing – it is helpful, but not required.
Personal medical history. Typically your genetic counselors will have access to relevant medical records, but it is always helpful to have certain medical records on hand, such as testing or screening results for any cancer (not just pancreatic). These can include biopsies, mammograms or colonoscopies, and their results – for example, the number of polyps seen on a colonoscopy.
Family history. Gather the family history of three generations of your family to the best of your ability. This would include their age, and if they’ve passed, their cause of and age at death. Three generations would include grandparents, parents, aunts/uncles, cousins, siblings, nephews/nieces, as well as children.
Family history of cancer or polyps. As part of gathering family history, if anyone in your family has had pancreatic or other cancer, try to learn more information such as what organ the cancer started in and the age at diagnosis. If possible, obtain the medical record of their diagnosis (called a pathology report). If your family member has had polyps identified on their colonoscopy screening, try to find out the age at which they had them identified and approximately how many polyps were found.
Genetic testing history. If you or any of your family members have been genetically tested for cancer in the past, try to obtain the record of the test results. If records are unavailable, try to find out the names of the genes and genetic variants identified.
Questions. It can be helpful to write down questions you may have in advance. For example, you may have questions about specific ways to lower your risk of cancer, or reproductive options after a positive test result such as prenatal diagnosis. Having a friend or family member at the appointment can also help you recall family history, ask questions, and remember important information.
Genetic counseling at Ariel
At Ariel, our patients have the option to have pre- and post-test genetic counseling with their test through an independent 3rd party genetic counseling provider. The counseling occurs over the phone, and so is available anywhere in the United States with flexible scheduling times. Medical records in digital form can be uploaded to the Ariel patient portal for sharing with your genetic counselor.
For more details on genetic counseling appointments, please visit our blog post, How a Genetic Counselor Can Help You Navigate Genetic Testing
For more information on genetic counseling and genetic counselors, visit https://aboutgeneticcounselors.org
and the National Society of Genetic Counselors