Editor’s note: Our “Let’s Talk About” series continues, focusing on testing as part of our Pancreatic Cancer Awareness Month campaign: “Talk. Test. Take Control. Three simple steps that can save your life.”
Knowledge is power. PanCAN strongly recommends that pancreatic cancer patients talk with their doctor to get genetic testing for inherited mutations and to help in making more informed treatment decisions.
If you are someone who has had a parent, child or sibling diagnosed with pancreatic cancer, contact PanCAN Patient Services to help you understand why you should consider genetic testing for inherited risk.
Here today to discuss common concerns and hesitations about genetic testing from both patients and families is Linda Rodgers-Fouché, MS, LCGS, a senior genetic counselor in the Center for Cancer Risk Assessment at Massachusetts General Hospital. She specializes in families with gastrointestinal cancers, including pancreatic cancer.
PanCAN: I am a pancreatic cancer patient. What if I find out that I could have passed an increased risk for pancreatic cancer on to my kids, or that my siblings could be at higher risk?
LRF: Many patients are concerned about their family members having an increased risk for cancer or causing anxiety from the knowledge of risk. Of course, no one wants harm to come to the people they love. In my experience, and there’s research to back this up, most people handle the news of being at increased risk for cancer quite well.
They typically feel empowered by this information once they have time to process it. I often remind my patients that their children and siblings may already be worried about their risk for pancreatic cancer, so genetic test results may not shift their feelings significantly.
Instead, it allows them to make more informed medical decisions to reduce cancer risk or detect cancers at an early stage. Even if genetic testing ends up being helpful to family members, some people may still feel guilty if inherited gene mutations are discovered. Remember that we can’t pick or choose the genes we are born with or the genes we pass on.
PanCAN: My family member has pancreatic cancer, and I’m considering getting genetic testing. What if I find out news that is upsetting? What if I am at increased risk for pancreatic cancer?
LRF: It is completely normal to feel anxious after learning you have an increased risk for pancreatic cancer. It may be even harder if you’ve recently watched a loved one go through a pancreatic cancer diagnosis. It’s important to speak with a genetic counselor and weigh the pros and cons of genetic testing before making a decision. It also has to be the right time for you to go through the process. I have had many patients realize that testing at a particular moment would not be helpful to them and return to test months or years later. Ultimately, genetic testing is not the right choice for everyone. If you feel like knowing you are at increased risk for pancreatic cancer would do more harm than good, then testing may not be appropriate for you.
Even if you feel ready to have a genetic test, the news may still be upsetting. Discussing your concerns with other individuals with hereditary risk can be helpful. Support groups are available, or your genetic counselor may be able to connect you with a peer. PanCAN Patient Services is also a great resource for anyone going through genetic testing; case managers can provide helpful links and information to help you feel supported and informed.
PanCAN: Should I talk to my children about genetic testing results if positive? And should I encourage them to get tested (if age appropriate)?
LRF: Research has demonstrated that discussing hereditary cancer risk with children in an age-appropriate way is helpful. Children usually process this information better through introducing it in normal family discussions rather than revealing a big secret at a certain age. Although ongoing, open conversations with children and teens are beneficial, we generally do not recommend pancreatic cancer genetic testing for minors for two reasons.
First, the risk for pancreatic cancer is not increased in childhood, so their healthcare would not change even if they tested positive. Second, by waiting until they are adults, children can make their own informed decision whether to test or not. There are rare scenarios where testing in childhood may be appropriate, so it’s important to discuss your specific case with your genetic counselor.
PanCAN: My family isn’t onboard with genetic testing, but I am – what should I do?
LRF: Let your family know you plan to pursue genetic testing and ask if they would want to know your results. It’s easier to navigate these conversations prior to testing. You might consider inviting some of these family members to your genetic counseling appointment so everyone can ask questions and express their concerns about genetic testing. It can be difficult to decide about testing when family members have varying opinions, but ultimately the decision to test is yours.
Up next: How to prepare for a meeting with a genetic counselor. And, in two weeks, more about how to talk to your family about genetic testing.