“Genetic testing can help identify those at risk,” say the experts at UT Southwestern Harold C. Simmons Comprehensive Cancer Center in this article of particular relevance to the Ashkenazi Jewish community, who are among the highest risk groups for pancreatic cancer.
An exclusive DJM Health Report by
Elise Watson, M.S., CGC
Pancreatic cancer is one of the most dangerous types of cancer, so taking steps to identify risk factors is crucial.
If you have a family member with the disease, or if you’re diagnosed with pancreatic cancer, you might want to consider genetic testing to see if there’s a hereditary cause.
About 10 percent of cases have hereditary links. A lot of people think that if they don’t have children, they don’t need genetic testing. But knowing the genetic background of your cancer provides valuable information:
- It can change your treatment options. Within recent years we’ve discovered that identifying hereditary causes can change the way the medical team thinks about treating pancreatic cancer. That’s because people may respond better to certain drugs if their cancer has a hereditary cause, compared with people with cancers that aren’t known to be hereditary. Immunotherapy is a big topic now in cancer genetics. Sometimes we can use a drug to target the mutations we identified in someone’s genes.
- It can raise awareness of possibly higher cancer risk in other parts of the body. When we see hereditary pancreatic cancer, the patient or family may also be at risk for breast, ovarian, prostate cancer, melanoma, or other cancers depending on the hereditary condition.
- It can inform decisions for your family members. Knowing there’s a hereditary cause of cancer might encourage family members to be more vigilant about screening and early detection. Doctors might recommend more frequent screenings, or screenings that start at younger ages, which in some cases can even prevent cancer from occurring.
Who Should Be Offered Genetic Screening?
For people with pancreatic cancer, guidelines from the National Comprehensive Cancer Network recommend that they be tested for mutations in the BRCA1 and BRCA2 genes, two genes better known for their link with breast cancer. Given these guidelines, testing is covered by most insurance companies and Medicare, since the presence of any pancreatic adenocarcinoma is recognized as a standalone criterion for genetic testing consideration.
People with a parent, sibling, child, grandparent, aunt, or uncle with pancreatic cancer should also consider testing. At UT Southwestern, currently we recommend that anybody with pancreatic adenocarcinoma or a first- or second-degree relative with pancreatic adenocarcinoma should be offered genetic testing.
What if I’ve Already Been Tested?
If you’ve had genetic testing in the past, you might want to talk to a genetic counselor to learn what new information you could obtain with today’s tests. Today, the number of genes sampled for many types of cancer has increased, and may not have been analyzed previously. Additionally, talking with a genetic counselor is especially important if you took a direct-to-consumer test.
Direct-to-consumer tests are offered online and at retailers, and generally involve a mail-in saliva test. They give people access to genetic testing typically without any involvement by a health care professional.
People come in and say they already did direct-to-consumer testing and it was negative, so they don’t need anything else, but these tests are not all created equal. Some are offered by clinical testing companies while others are not. They might be looking at ancestry or ethnicity or include some health information.
The biggest thing to realize with direct-to-consumer genetic testing is that it’s not always a clinical test. Sometimes you’re only looking at a few mutations in a gene when there could be thousands. That limits your information and might give you a false sense of security or reassurance. You might think you tested negative, but you tested negative for three mutations instead of thousands.
While direct-to-consumer testing might provide interesting information about your family history, clinical testing is a better choice when it comes to your health care. Anyone doing direct-to-consumer genetic testing for clinical reasons should have the results confirmed with a clinical test. A clinical test through certified genetic counselors or other trained health care professionals gives you the benefit of a team who can:
- Take a comprehensive family tree and personal and family medical history
- Help you find the test that’s right for what you need
- Walk you through the results and provide evidence-based recommendations
- Help you navigate follow-up appointments with appropriate providers
If you considered clinical genetic testing but found the expense too high, take another look. Tests that used to run $2,500 or higher now have self-pay prices of $250 or less, thanks to changes in technology and more competition.
What Does Genetic Screening Involve?
While the screening itself simply examines a blood or saliva sample, the full process is more thorough and complex. It starts with detailed information that can help inform the test results.
When people come in to see us, we talk over their medical history, any diagnosis of cancer, and their risk factors. We take a detailed family history, and we use all of that information to determine what genes at minimum we should be thinking of.
We talk about testing options and what information a patient may want to learn, and what information a patient may not want to learn. Together we come to a decision as to what level of testing they want, if any at all.
The team at Simmons Cancer Center can customize genetic testing to look for any combination of known hereditary cancer risk factors. People at risk for hereditary pancreatic cancer often choose either:
- A targeted panel that only looks for genes related to pancreatic cancer
- A broader test that looks at genes that are often linked with more common types of cancer (such as pancreatic, breast, prostate, ovarian, colon, and/or uterine cancer)
- An expansive panel that looks at many genes related to a wide range of cancers with differing levels of actionable information
The choice of which genes to test for is largely personal. Some people want as much information as possible, while others find a lot of information too overwhelming and want to stick to what they need to know.
For people who choose testing, a blood or saliva sample can be collected that day and results are usually available within two to three weeks.
We call everyone, regardless of the results. We review the results by phone and if they want to come back in person, we schedule that appointment.
If someone is found to have a genetic cause linked to their cancer, they talk about screening tests, preventive surgeries, and how the results might impact treatment.
A negative genetic test doesn’t necessarily mean people are in the clear. There might still be recommendations to change their surveillance regimen. If someone has a family history of cancer, they could still face a higher risk. It could be a genetic mutation that we haven’t discovered yet that’s putting the family at risk. Maybe our patient doesn’t have it but other people in the family do. We might need to test other people in the family to clarify our patient’s risk.
While there are no consensus recommendations about surveillance for pancreatic cancer – who needs which screenings and at what age to start – various expert groups have given recommendations. The Pancreatic Cancer Prevention Clinic at Simmons Cancer Center is focused on looking for early signs of the disease and makes individualized recommendations based on each person’s history and risk factors.
Our team talks to people with a family history of pancreatic cancer about controlling their modifiable risk factors like tobacco use, alcohol consumption, diet, and exercise. You can’t take away that genetic component, but those are some risk factors you can control.