Editor’s note: Today is the start of a new series, “Let’s Talk About,” where we’ll go in-depth to cover topics that may be of special interest to you as a PanCAN supporter. Throughout November, Pancreatic Cancer Awareness Month, we’re discussing testing – biomarker and genetic testing – as part of our focus on “Talk. Test. Take Control. Three simple steps that could save your life.” Today, we’re answering common questions about testing with Lynn Matrisian, PhD, MBA, PanCAN’s Chief Science Officer.
PanCAN: Lynn, let’s start with a question that we hear a lot – is pancreatic cancer hereditary?
Lynn: We know that about 10% of pancreatic cancers are hereditary – for every 10 people with pancreatic cancer, one likely has an inherited mutation in their DNA that increased their risk for getting the disease. This is called a “germline mutation.”
Genetic mutations that happen only in the pancreas during a person’s lifetime, rather than those that are passed from parent to child via a germline mutation, cause the vast majority of pancreatic cancers.
PanCAN: How do you know if you are at risk for hereditary pancreatic cancer?
Lynn: If you are a first-degree relative (that means a parent, child, or brother or sister) of someone diagnosed with pancreatic cancer, you may have an increased risk of developing the disease.
That’s why the NCCN (which stands for the National Comprehensive Cancer Network) and PanCAN recommend that your family member with pancreatic cancer have genetic testing for inherited mutations.
Some important things to note, here.
If your first-degree relative with pancreatic cancer had genetic testing and the results were negative (no germline mutation) – this often means you do not need to get genetic testing.
If the results were positive, or you don’t know what the results were, or if you have several close family members with cancer, PanCAN recommends that you speak with a genetic counselor to see if you should get genetic testing to learn about whether you have inherited risk and if there are options for monitoring.
PanCAN: Tell us more about genetic testing and how it works.
Lynn: As we’ve said, genetic testing looks for inherited mutations.
You may have been born with inherited mutations even if you don’t have a known family history of cancer. I want to really emphasize that if genetic testing reveals that you are at higher risk than most people for developing pancreatic cancer, it does not mean that you will definitely get the disease.
Also, if genetic testing does reveal a mutation, there are screening programs that your doctor and genetic counselor can speak with you about. These programs offer regular, ongoing monitoring. So genetic testing is one important way that you can be your own best advocate when it comes to your health.
How it works – analysis is done on a sample of your blood or saliva and is a very simple procedure. The tests can be expensive. Your insurance company may cover the testing. If they are declining to cover it, your genetic counselor can often help get it covered by telling your insurance company why it’s important for you.
PanCAN has an excellent Patient Services team here on staff that can help you get the conversation about testing started – whether it’s with your doctor or your genetic counselor. Contact us for free help and support – we can also explain more about testing, how to find a genetic counselor in your area, how to find screening programs for regular monitoring, and answer any other questions you have.
PanCAN: Based on NCCN guidelines, PanCAN strongly recommends that patients have genetic testing. Aside from helping their family understand their risk, what is another benefit?
Lynn: Absolutely – genetic testing can help doctors and patients make more informed treatment decisions. In addition to analysis of the patient’s tumor tissue, which we’ll talk about below, germline mutations that they were born with can also impact which treatment might be best for them. One great example is the drug Lynparza, which was approved last year for patients based on their having a specific germline mutation and their tumor’s response to prior treatment.
PanCAN: The other important type of testing for pancreatic cancer patients is related to biomarker testing. What is this and why is it critical for patients?
Lynn: Biomarker testing of tumor tissue tells you about the biology of your tumor. It is also sometimes called molecular profiling, tumor testing or genomic testing. A tissue sample is collected through a biopsy or surgery and analyzed. It can show changes in the tumor’s genes or proteins. Your doctor may be able to use this information to make treatment decisions. In fact, evidence shows that one out of every four pancreatic cancer patients has an alteration in their tumor that may impact which treatment may work best for them.
PanCAN Patient Services can help patients do this. Our Know Your Tumor® precision medicine service offers testing for patients, free of charge, and we can also help patients speak with their healthcare team about having testing done through the institution where they’re being treated. Many hospitals that treat a large number of cancer patients offer biomarker and genetic testing.
Biomarker testing of tumor tissue can help patients find treatment options that their doctors hadn’t considered, which can improve survival. PanCAN has published results from Know Your Tumor
showing that pancreatic cancer patients who are able to go on therapies that match their tumor biology can live an average of one year longer than patients who aren’t.
PanCAN: When is the right time for patients to have genetic and biomarker testing?
Lynn: It’s recommended that pancreatic cancer patients get biomarker testing and genetic testing as early as possible, but it can happen at any time.
Because tissue from the tumor is needed to perform biomarker testing, the best time to get that tissue is right up front with the diagnostic biopsy. If you are having your tumor surgically removed, tissue from the surgery can be used. In most other cases, a biopsy would be needed.
And if you are currently on treatment, you can still get testing done right now so that if you need to make other treatment decisions later, you and your doctor have the information you need.
PanCAN: What else should patients and families know about testing?
Lynn: PanCAN Patient Services is here to answer any questions about testing and explain the different types in more detail. If you’re a patient who has already had biomarker or genetic testing, we can help you understand the results and give you information on treatment options, including clinical trials.
Up next: We’ll cover common concerns regarding testing in a conversation with a genetic counselor who specializes in families with pancreatic cancer.