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FAQs About Pancreatic Cancer, Genetic Testing, and Hereditary Risks
Huntsman Cancer Institute genetic counselor Cathryn Koptiuch, CGC, MS, answers common questions people ask about pancreatic cancer and the genetic testing associated with it.
What are signs of pancreatic cancer?
Often, symptoms associated with pancreatic cancer do not appear in early stages. Similar symptoms can also be caused by other, non-cancerous medical issues or infection. Talk to your doctor if you have any of these:
- Pain in the upper abdomen or upper back
- Yellow skin and eyes, and dark urine from jaundice
- Weakness
- Loss of appetite
- Nausea and vomiting
- Unexplained weight loss
People at an increased risk for pancreatic cancer based on their genetics and/or family history may qualify for pancreatic cancer surveillance. Surveillance means watching for cancer in people at higher risk. This includes yearly imaging tests that look at the pancreas. These tests help find abnormalities in the pancreas early, before symptoms may arise and when the disease is easier to treat.
Is pancreatic cancer genetic?
About 1 in 10 people with pancreatic cancer have a hereditary or genetic cause for their disease. An individual who has a mutation in certain protective cancer genes (CDKN2A, BRCA2, ATM and PALB2) can have an increased risk for pancreatic cancer.
This increased risk for pancreatic cancer can be passed within families. Hereditary cancer syndromes are rare. If you have a cancer syndrome, it doesn’t mean you will get cancer, but your odds are higher.
Who can be tested for hereditary pancreatic cancer?
Anyone who has been diagnosed with an exocrine pancreatic cancer can be tested. If the person with pancreatic cancer was unable to get testing before passing away, their parents, siblings, and children also qualify for testing.
Hereditary conditions that increase the risk of pancreatic cancer can also increase the risk for breast, ovarian, colon, and endometrial cancers, as well as melanoma. People with a personal or family history of multiple cancer types may also qualify for hereditary pancreatic cancer testing.
Meeting with a genetic counselor would help determine whether you or your relatives qualify for testing.
Why would genetic testing be helpful?
Genetic testing may help clarify whether you or your relatives have an increased risk for pancreatic cancer. This genetic information guides treatment decisions, future cancer screenings, and risk-reducing options, such as medications or surgeries.
A genetic counselor will use the test results to calculate your risks for cancer. The counselor will also recommend the best screening schedule for you based on your risk level.
If I learn I have a hereditary pancreatic cancer condition, what should I do?
The High Risk Pancreatic Cancer Clinic offers many services to people with an increased risk of pancreatic cancer. It provides information about pancreatic cancer screening, new surveillance tools and data, and changes to surveillance guidelines. Currently, patients undergoing surveillance for pancreatic cancer receive annual imaging of the pancreas with MRI and endoscopic ultrasound.
The High Risk Pancreatic Cancer Clinic is currently recruiting patients for research studies that focus on early detection of pancreatic cancer. Our clinical and research team is part of the PRECEDE Consortium, an international group of researchers, academics, cancer survivors, and families dedicated to preventing and ending pancreatic cancer.