FREQUENTLY ASKED QUESTIONS

Here are answers to questions asked by attendees during the webinar.

If you are a first-degree relative 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 monitoring. A genetic counselor is a healthcare professional who assesses a person's risk of developing hereditary (inherited) diseases over time.

Genetic testing is an analysis that involves identifying specific inherited mutations in a person's genes. This is typically done by analyzing a person's saliva or blood. Information learned from genetic testing can help inform family members of the risk of developing pancreatic cancer.

Genetic testing is usually requested by a doctor, genetic counselor or other healthcare provider. Samples are sent to a laboratory and then the finalized report is provided to the doctor or genetic counselor, who discusses the results with the individual who had the testing.

If a genetic counselor determines you are at an increased risk for developing pancreatic cancer, 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 PanCAN's 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 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 (e.g., 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.

Considering the challenges of diagnosing and managing pancreatic cysts, it is helpful to seek an opinion from a doctor who has experience in this area of medicine. Cysts are generally evaluated by doctors who have a specialty in pancreatic-related diseases, including gastroenterologists, surgeons, and in some cases a multi-disciplinary team. You can ask your current doctor to recommend a specialist for a second opinion or contact PanCAN's Patient Services to provide a list of specialists and cyst clinics around the country.

While there is no way to prevent cancer, there are some things that individuals who are at a 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.

Research in the area of diet and nutrition for pancreatic cancer is evaluating a wide array of topics, including foods that may increase the risk of pancreatic cancer and those which may decrease the risk. Researchers are also looking at ways to treat other nutritional concerns associated with pancreatic cancer, such as malabsorption and nutritional deficiencies, nutritional counseling, cancer cachexia (cancer-associated weight loss) in patients undergoing cancer treatment, and the use of nutrient-dense foods in the management of weight loss in cancer patients.

Good nutritional care improves outcomes and is critical to quality of life. Since each individual patient will have different nutritional needs, we recommend patients consult with a registered dietitian for nutritional advice. A dietitian or nutritionist who is familiar with cancer patients would be able to evaluate each patient's needs and help design a diet that is best for them. For help locating a dietitian in your area, contact PanCAN's Patient Services.

Research is ongoing, but more research is needed to best address nutritional concerns in patients with pancreatic cancer.

There are many treatment options available to patients with pancreatic cancer, which may be available through the doctor, or through participation in a clinical trial. For more information on treatments that may be best for you or your loved one, contact PanCAN's Patient Services. Treatment information may be provided specific to the type and stage of pancreatic cancer. A personalized clinical trial search can also be performed based on the patient's diagnosis, treatment history and travel restrictions. This information can be helpful to discuss with the healthcare team, to determine what is most appropriate. The healthcare team is best suited to provide specific recommendations regarding treatment options. If you have not already done so, PanCAN strongly recommends that you or your loved one consults with pancreatic cancer specialists who have experience diagnosing and treating the disease. PanCAN's Patient Services can provide a listing of specialists near you.

Every pancreatic cancer patient is different, and those who receive treatment based on their biology can live longer. PanCAN strongly recommends all pancreatic cancer patients get genetic testing for inherited mutations as soon as possible after diagnosis and biomarker testing of their tumor tissue to help determine the best treatment options. Genetic testing for inherited mutations can also inform family members of risk, regardless of family history. Patients may access both tests through their institutions, private companies or PanCAN's Know Your Tumor® precision medicine service. We encourage speaking with your healthcare team to determine if biomarker and genetic testing are appropriate, and how to access a service. For more information on Know Your Tumor, please contact PanCAN's Patient Services.

There are several clinical trials currently taking place that are studying investigational treatments in patients with known BRCA mutations present in their tumor, or inherited BRCA mutations passed down from a parent. These are studying therapies known as PARP inhibitors, which are a type of targeted therapy that has been shown to be effective in patients with BRCA mutations. Most recently, a targeted therapy known as Lynparza (olaparib), was approved by the United States Food and Drug Administration (FDA) as a maintenance therapy for patients with inherited (germline) BRCA-mutated metastatic pancreatic cancer. Research also indicates that patients with known BRCA mutations are more sensitive to platinum-based chemotherapy drugs, which are available outside of clinical trials. For more information on treatments that may be appropriate for patients with known BRCA mutations, or how patients can determine if they have a BRCA mutation, contact PanCAN's Patient Services.

An actionable alteration is a mutation for which there is an existing therapy that is thought to be especially effective for tumors with that mutation. While some patients may find that there are actionable alterations in their tumor, this is not always the case. However, any information that can be learned about a patient's tumor biology is helpful. For patients who do not have actionable alterations, this is very helpful for oncologists to know which treatments may be options for them, and which may not. There are many treatment options available for patients with all types and stages of pancreatic cancer, including standard of care and off-label treatments, and clinical trials. For more information on these treatments, contact PanCAN's Patient Services. Personalized information on treatments, including clinical trials, can be provided to discuss with your healthcare team.

If you are interested in PanCAN's Precision PromiseSM, we encourage talking to your healthcare team, to determine if it is an appropriate clinical trial for you. Precision Promise is an adaptive clinical trial sponsored by PanCAN, with 15 Clinical Trial Consortium sites/locations across the United States. Like all other clinical trials, it has very specific eligibility criteria that patients must meet in order to participate. Precision Promise is enrolling patients with metastatic pancreatic cancer who have either received no treatment in the metastatic setting (first line), or who have only received one prior treatment for their cancer in the metastatic setting (second line). If you are interested in Precision Promise, or other clinical trials, contact PanCAN's Patient Services for more information, and to learn about sites near you.

Research on pancreatic surgery is currently ongoing, and there are clinical trials taking place to determine what is most effective for patients with resectable (operable) pancreatic cancer. Research is also being performed on patients who do not currently have resectable disease, to determine if surgery may be an option. Some of the clinical trials that are currently taking place are studying pancreatic surgery in combination with other novel approaches, to determine if it is more effective than the currently used pancreatic surgical procedures. Others are attempting to determine the most appropriate time frame for patients to undergo pancreatic surgery. For more information on clinical trials, or information on pancreatic surgeries in general, contact PanCAN's Patient Services. Some institutions across the United States also utilize minimally invasive surgical techniques, which include robotic or laparoscopic surgery, among others. PanCAN strongly recommends that patients have a high-volume pancreatic surgeon (more than 15 surgeries per year) perform the surgery. For more information on locating a high-volume surgeon in your area, contact PanCAN's Patient Services.

Immunotherapy is a type of treatment that stimulates the body's immune system to fight cancer. Immunotherapy works by stopping or slowing the growth or spread of cancer cells as well as helping the immune system increase its ability to attack cancer cells. There are many different types of immunotherapies being tested in clinical trials, including monoclonal antibodies, immune checkpoint inhibitors, adoptive T-cell transfer and vaccines. Many clinical trials are evaluating immunotherapies in combination with targeted therapies, radiation or other immunotherapies. Contact PanCAN's Patient Services for a personalized clinical trials search and to learn more about potential immunotherapy options to discuss with the healthcare team.

An immunotherapy called Keytruda (pembrolizumab) is approved for the treatment of patients that have been identified as having a biomarker referred to as microsatellite instability-high (MSI-H), mismatch repair deficient (dMMR) or tumor mutational burden-high (TMB-H). About 1 to 3% of patients with pancreatic cancer have MSI-H. Patients can undergo genetic testing or biomarker testing of their tumor tissue to determine if they fit these criteria. These tests may be available through their treating institution or PanCAN's Know Your Tumor precision medicine service. Contact PanCAN's Patient Services for additional information.

Learn more about immunotherapies.

If you have any questions about treatment options, including clinical trials, that may be right for you, contact our PanCAN Patient Services team for answers. Our expert case managers are here from 7 a.m. to 5 p.m. PT, Monday through Friday, to help. Contact us at 877-272-6226 or patientcentral@pancan.org.

Support Our Mission

Since 2003, PanCAN has invested approximately $126 million in pancreatic cancer research – and we plan to invest another $23 million this year. This investment is only made possible by the support of our donors. We need your help now more than ever to continue to accelerate progress on this disease and help improve patient outcomes.

PanCAN is leading large-scale, groundbreaking research initiatives that will be the catalyst for transforming the way pancreatic cancer is detected and treated. No single pancreatic cancer organization has taken on such a comprehensive approach. As an unbiased stakeholder, PanCAN is uniquely positioned to bring together the nation's key thought leaders and experts in the pancreatic cancer research field to help patients thrive.

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