PanCAN President and CEO Julie Fleshman, JD, MBA, welcomes a panel of pancreatic cancer experts and a five-year pancreatic cancer survivor for an hour-long question-and-answer session discussing:
- The importance of biomarker and genetic testing – what are they and how do they help us?
- Advances in precision medicine and treatment options
- What high-risk individuals need to know about testing
- How PanCAN Patient Services can get you the resources you need
- The survivor perspective on the importance of testing
Visit pancan.org/awareness for more information about testing for pancreatic cancer.
Julie M. Fleshman, JD, MBA
PanCAN President and CEO, leading the way for more than two decades in PanCAN’s approach to take bold steps to make progress in pancreatic cancer research and improve patient outcomes
Eileen O’Reilly, MD
PanCAN Scientific and Medical Advisory Board Member, PanCAN’s Precision Promise Site Principal Investigator, Director of Medical Initiatives at David M. Rubenstein Center for Pancreatic Cancer, Memorial Sloan-Kettering Cancer Center
Michael Pishvaian, MD, PhD
Director of Gastrointestinal, Developmental Therapeutics and Clinical Research Programs for the Johns Hopkins Kimmel Cancer Center in the Greater Washington Area and an associate professor at the School of Medicine
Alison Klein, PhD, MHS
PanCAN Scientific and Medical Advisory Board Member, Professor of Oncology, Pathology and Epidemiology Co-Leader, Cancer Prevention and Control Program (CPC) Johns Hopkins Medicine
Five-year survivor and member, PanCAN Survivor Council
FREQUENTLY ASKED QUESTIONS
Early detection refers to the different tests, procedures, and surveillance programs that may help detect pancreatic cancer earlier. Pancreatic cancer that is detected earlier may lead to increased survival. Other types of cancer are caught early because the symptoms are easy to detect. However, the symptoms of pancreatic cancer can be vague and easy to mistake for other, less serious illnesses. Because of this, researchers have developed tests that may be able to detect pancreatic cancer before it spreads to other parts of the body. Early detection may include blood tests, and imaging tests such as CT scans, PET scans, Magnetic Resonance Imaging (MRI), and Endoscopic Ultrasound (EUS). If you are at higher risk of developing pancreatic cancer because of genetic factors or underlying illnesses, early detection is an important part of surveillance programs that monitor your health for any changes and signs of pancreatic cancer.
Around 10 percent of pancreatic cancers are hereditary. This means that for every 10 people with pancreatic cancer, one likely has an inherited mutation in their DNA that increased their risk of getting the disease. Mutations that can be passed down that increase risk for pancreatic cancer are called “germline mutations.” This is the only way pancreatic cancer can be inherited.
Healthcare providers can determine if hereditary pancreatic cancer might be in your family by looking at your family tree to determine risk, and by analyzing the results of any genetic testing.
If you are a first-degree relative (parent, child, brother, or sister) of someone who has been diagnosed with pancreatic cancer, you might be at risk of developing the disease. PanCAN and the National Comprehensive Cancer Network (NCCN) recommend that your family member with pancreatic cancer have genetic testing for inherited mutations. If your first-degree relative with pancreatic cancer had genetic testing and the results were negative, this often means you do not need to get genetic testing.
Genetic testing looks for inherited mutations by analyzing a blood or saliva sample. If the results come back positive, this means that you have a mutation that has been shown to cause an elevated risk of getting pancreatic cancer. It does not mean that you will definitely get the disease. If testing does reveal a mutation, you can speak with your doctor or genetic counselor about entering a surveillance program, which offers regular imaging and tests to monitor any changes to your health that might be related to pancreatic cancer.
Usually, your doctor has to order the genetic testing kit for you, although there are some tests that you can purchase and receive on your own. After providing the blood or saliva sample, the kit is either mailed by you or picked up by someone associated with the testing company. Once it arrives at the laboratory, it is tested, and the results are either sent to your doctor or to you, depending on the company.
Genetic testing can be expensive. If your insurance company is refusing to cover the testing, your genetic counselor can help get it covered by speaking with your insurance company about why it is important for you.
Genetic testing is important because it can help doctors, patients, and family members make informed decisions about their care. Those who undergo genetic testing and find that they have a germline mutation that could elevate their risk of pancreatic cancer can enter a screening program, which could catch pancreatic cancer early and improve outcomes.
Also, knowing what kinds of germline mutations or tumor biomarkers exist can help doctors decide on a treatment that is specific to those characteristics, which may lead to improved outcomes.
Biomarker testing is done by analyzing a tumor tissue sample collected from a biopsy or surgery. This kind of testing can help you, and your doctors learn more about the biology of your tumor. Some tumors have genes and proteins that can make certain treatments work differently. Your doctor can use this information to make treatment decisions.
PanCAN Patient Services can help patients access biomarker testing. 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 are 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 had not considered, which can improve survival. PanCAN has published results from the Know Your Tumor service, 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 are not.
Pancreatic cancer patients should have biomarker testing and genetic testing as early as possible after diagnosis, although testing can also be performed at any time.
If you have already had surgery or a biopsy done in the past, it may be possible to use this tissue. Speak with the institution where the biopsy or surgery was performed to see if the tissue is available. You should also speak with the service you will utilize for testing to determine if they have any requirements regarding how old the tissue is.
If you are a first-degree relative (parent, sibling, child) of someone diagnosed with pancreatic cancer, you may have an increased risk of developing pancreatic cancer. Your family member with pancreatic cancer is strongly recommended to undergo genetic testing for inherited mutations. Negative results often mean you do not need to get genetic testing. If the results are positive, unknown, or if you have several close family members with cancer, the Pancreatic Cancer Action Network recommends you consult with a genetic counselor to determine if you should get genetic testing for inherited cancer risk and if you should discuss options for surveillance. A genetic counselor is a healthcare professional who assesses a person’s risk of developing hereditary (inherited) diseases over time.
If a genetic counselor determines you are at an increased risk for developing the disease, doctors recommend annual imaging scans starting at age 50 or sooner. Additionally, pancreatic cancer experts recommend high-risk individuals enroll in a surveillance (sometimes called an early detection or screening) program if they qualify. In these programs, doctors actively monitor at-risk individuals with imaging tests including CT scans, endoscopic ultrasounds (EUS), and endoscopic retrograde cholangiopancreatography (ERCP). For more information on genetic testing, how to locate a genetic counselor, surveillance programs, or diagnostic tests, contact Patient Services.
Pancreatic cysts are growths found on or within the pancreas that are filled with fluid. There are several different types of pancreatic cysts, most of which are benign (non-cancerous), while some can be malignant (cancerous). It is important to keep in mind that not all cysts have an associated risk of progressing to cancer, and the type of cyst will indicate the likelihood that it may become cancerous. In order to determine if a cyst does have an increased risk of being cancerous, it is important to properly diagnose the cyst. However, diagnosing pancreatic cysts can be difficult. Most people do not experience any symptoms, so in many cases, cysts are found incidentally when individuals undergo imaging testing (i.e. CT or MRI scans) for a different condition. The management and monitoring that may be appropriate is also different for each type of cyst. Management strategies for cysts include draining the cyst fluid, surgical removal of the cyst, or monitoring of the cyst to determine if there are changes to the cyst over time.
While there is no way to prevent cancer, there are some things that individuals who are at high risk can do to stay healthy. The American Institute for Cancer Research (AICR) publishes nutrition and exercise recommendations for all types of cancer prevention and cancer survivors. These guidelines recommend:
- Being as lean as possible without becoming underweight.
- Eating a variety of vegetables, fruits, whole grains and legumes such as beans daily.
- Being physically active for at least 30 minutes per day, five times a week.
- Limiting sedentary habits.
- Avoiding sugary drinks and limiting consumption of energy dense foods.
- Limiting consumption of red meats (beef, pork, lamb) and avoiding processed meats.
- Choosing a balanced diet with a variety of foods, rather than taking supplements to protect against cancer.
- For mothers, breastfeed your baby if you can. Breastfeeding is good for both mother and baby.
- Limiting consumption of salty foods and foods processed with salt (sodium).
- Limiting alcohol consumption to one drink per day for women and two drinks per day for men.
- Avoiding smoking or chewing tobacco.
If you are concerned about your cancer risk, we encourage you to consult with your healthcare team.
Early detection is a major focus of our organization, and we are currently developing an Early Detection Initiative with the goal of identifying an early detection test for pancreatic cancer. Our organization has also funded several Early Detection Targeted Grants, which are designed to focus on identifying new biomarkers or improving imaging strategies to diagnose the disease in its earlier, more treatable stages. We are hopeful that through our Early Detection Initiative, an early detection method will be developed within the next few years that is sufficiently sensitive, specific, and cost-effective in identifying pancreatic cancer at an early stage.
Contact PanCAN Patient Services
for answers to any questions you have about pancreatic cancer, treatment options and more. Our expert case managers are here from 7 a.m. to 5 p.m. PT, Monday through Friday, to help. Contact us at 877-2-PANCAN or email@example.com.
We’re looking forward to sharing all about the critical role early detection and testing plays for patients and high-risk individuals. Add this event to your calendar and save pancan.org/WPCD2021 for Thursday, Nov. 18, at 11 a.m. PT | 2 p.m. ET. Add to Calendar
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