Guidelines for genetic testing in people diagnosed with pancreatic cancer
There are national guidelines for genetic counseling and testing for inherited mutations linked to cancer. Experts recommend all people diagnosed with a type of pancreatic cancer known as diagnosed at any age have genetic counseling and testing.
Other people who may benefit from genetic counseling and testing
You may benefit from additional genetic counseling and expanded genetic testing if you had genetic testing in the past, you tested negative, and the following applies to you:
- you had a test that only looked for one or a few genes, or
- you had genetic testing before 2014. Genetic testing has improved, and laboratories can now find gene mutations that may have previously been missed.
Pancreatic cancer survivors and those in treatment should speak with a genetics expert to see if testing is right for them.
Guidelines for genetic testing for relatives of people who have been diagnosed with pancreatic cancer
Genetic counseling and testing is also recommended for anyone with a first-degree or second-degree relative who has been diagnosed with pancreatic at any age.
See our sections Testing Guidelines by Cancer Type and Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information.
Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.
- The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization."
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you.
- FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
- Ask your doctor for a referral to a genetics expert.
The following organizations offer peer support services for people with or at high risk for pancreatic cancer:
- FORCE peer support
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Private Facebook Group
- Virtual and in-person support meetings
- Join a Zoom community group meeting.
- American Sign Language
- People of Color
- Let's Win PC
- The Healing NET Foundation is a nonprofit organization for people with neuroendocrine cancers.
- The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of neuroendocrine cancer and providing support for caregivers and people with NETs.