If you have two or more first-degree relatives who have had pancreatic cancer, a first-degree relative who developed pancreatic cancer before the age of 50, or an inherited genetic syndrome associated with pancreatic cancer, you may have an increased risk of developing pancreatic cancer. The Pancreatic Cancer Action Network (PanCAN) strongly recommends consulting with a genetic counselor to determine your risk and eligibility for a screening program.

But what does a genetic counselor do, and who should see them?

A good start is having as much knowledge as possible about your family history – of pancreatic cancer as well as other cancer types.

Christine Bruha, MS, CGC

“Being familiar with your family medical history, such as family history of cancer, can help direct genetic counselors and physicians in terms of what tests and screenings might be most appropriate for you,” said Christine Bruha, MS, CGC, certified genetic counselor at Moffitt Cancer Center.

Bruha continued, “Sharing family history information with your healthcare team can directly influence whether they recommend any changes to your medical management in order to ensure your overall health and well-being.”

Taking PanCAN’s risk assessment test can help determine whether you’re at an increased risk for developing pancreatic cancer. PanCAN Patient Services Case Managers are also here to discuss the genetics of pancreatic cancer and provide information about how to find a genetic counselor or surveillance program near you.

“Whether someone has a personal or family history of pancreatic cancer, genetic counselors are experts in risk assessment and will discuss the chance of an inherited cancer risk in your family,” Bruha said. “One of the key components of a genetic counseling appointment is education.”

If a physician or genetic counselor deems it appropriate, they will recommend genetic testing. But as with many health-related decisions, choosing to undergo genetic testing – and choosing which test to take – can be complex.

Bruha explained, “Clinical genetic testing can help identify inherited cancer risk and is available via a consultation with a medical professional, such as a genetic counselor or physician.

“Direct-to-consumer (DTC) tests are available without the supervision of a medical professional, but they should not be used to make decisions for medical treatment.”

At-Home Genetic Testing Doesn’t Show the Full Picture

An example of a DTC test making the news recently is 23andMe, which recently obtained FDA authorization to test for three specific mutations in the BRCA1 and BRCA2 genes. While BRCA mutations can confer risk of pancreatic cancer, in addition to breast, ovarian and prostate cancers, caution must be taken when considering at-home genetic testing.

At-home genetic testing does not provide comprehensive results.

“There are over 1,000 known mutations in BRCA1/BRCA2 that cause increased cancer risk, and the 23andMe test only detects three of these. Thus, even though someone may have a ‘negative’ 23andMe test, they did not have complete or comprehensive testing,” Bruha said.

The most important guideline, according to Bruha, is, “If someone is considering at-home testing, has a strong family history of cancer, or simply wishes to learn more about their cancer risk and genetic testing, they should consult with a medical professional to ensure they receive the most appropriate test and care for them.”

And the conversations with physicians and genetic counselors don’t end once the clinical genetic test results are obtained. Bruha noted, “If test results were ordered by a medical professional, you will typically have a discussion thoroughly reviewing those results. If results are positive, you will discuss what types of cancers you are at risk for, and how high those risks are.”

Even if the results are negative, “your genetic counselor or physician may still recommend increased screening depending on the cancers in your family,” Bruha added.

There is currently no standard diagnostic tool or established early detection method for pancreatic cancer. However, individuals who are determined to be at higher risk for the disease may be eligible to participate in screening or surveillance programs offered throughout the country.

Contact PanCAN Patient Services to learn more about pancreatic cancer risk factors, genetic tests, genetic counseling and screening and surveillance programs.