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On World Pancreatic Cancer Day, hundreds of patients, caregivers and loved ones tuned in for our special virtual event, “How Early Detection Can Change the Course for Pancreatic Cancer.” Our guests shared their stories and talked about the important work they’re doing on behalf of everyone affected by pancreatic cancer. We also discussed the latest research developments.
So many great questions came in from the PanCAN community that we weren’t able to get to all of them! Here, we follow up and dive more deeply into areas of interest.
What are the current options for early detection of pancreatic cancer?
No universal screening test – like a mammogram or colonoscopy -- exists yet for pancreatic cancer. As a result, it’s important to know the risk factors for the disease and to be familiar with the symptoms. Have a conversation with your doctor about your risk and advocate for yourself if you are experiencing symptoms.
Use our doctor conversation guide and our 10-question risk factor quiz to help you navigate these discussions.
I’m a two-and-a-half-year pancreatic cancer survivor. My maternal grandmother died of pancreatic cancer in 1991, and I knew very little about it. I had genetic testing done. How do my sons get the right affordable genetic testing?
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. If your first-degree relative with pancreatic cancer had genetic testing and the results were negative, meaning no inherited mutation was identified, 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 through surveillance programs.
Learn more about genetic testing in this Q&A with PanCAN’s Chief Science Officer.
How do you find out about early detection studies? Is this something Patient Services provides?
Yes! Contact PanCAN Patient Services for more information. We maintain a comprehensive list of early detection studies enrolling participants across the country. The goal of these programs (also called surveillance or screening programs) is to detect early pancreatic cancer and pre-cancerous lesions in people who are at high risk of developing the disease.
These programs involve regular monitoring of high-risk persons using tests such as endoscopic ultrasound (EUS), computerized tomography (CT) scan, or endoscopic retrograde cholangiopancreatography (ERCP). Participants may also undergo novel imaging procedures, be tested for genes associated with hereditary pancreatic cancer, and have biological fluids, such as blood and pancreatic juice, collected and analyzed.
Besides the advantage of surveillance performed by knowledgeable doctors and possibly benefiting from new diagnostic tests, study participants will help advance the science of early detection. These studies should provide information regarding who is at risk, what genes are most involved in developing pancreatic cancer and the best methods for early diagnosis and treatment.
Family registries (also called genetic registries) also exist for people who have had multiple family members diagnosed with pancreatic cancer. These voluntary programs collect diagnosis and genetic information from families, helping scientists advance research. Families also learn more about risk and prevention.
Learn more about surveillance programs and registries.
Isn’t there a blood test out there now that claims to be able to diagnose a number of different cancers, including pancreatic cancer?
Commercial blood tests are one tool to help detect pancreatic cancer at an earlier stage. These tests detect certain markers or compounds in the blood that may suggest cancer is present. Several now on the market are multi-cancer tests, like the Galleri test from GRAIL and OneTest™, a multi-cancer test from 20/20 GeneSystems that looks for certain proteins that may signal the presence of cancer.
The Avantect Pancreatic Cancer Test from ClearNote Health focuses specifically on pancreatic cancer. It uses a blood sample to detect a biomarker called “circulating free DNA.” A negative test result means that this biomarker has not been detected. A positive test result means that this biomarker was detected, which could mean a person has pancreatic cancer, or other conditions such as pancreatitis or intraductal papillary neoplasms (IPMNs, a type of cyst of the pancreas).
It’s important to note that a blood test alone cannot say with certainty whether a person has pancreatic cancer. Follow-up testing such as imaging and a biopsy are necessary. Since many blood tests are expensive and not always covered by insurance, the first step is to have a conversation with your doctor about your risk factors and whether a blood test would be helpful.
Read more about blood tests and other promising research in this Research Spotlight from PanCAN’s Chief Scientific and Medical Officer.
Please discuss pancreatic cancer screening for patients with BRCA1 or BRCA2 gene mutations.
Mutations in the BRCA1 or BRCA2 gene are associated with an increased risk of developing certain cancers, such as breast, ovarian, prostate, melanoma and pancreatic. Having a mutated, or defective, copy of the BRCA1/2 gene does not mean an individual will develop pancreatic cancer.
The risk of developing pancreatic cancer varies depending on the BRCA gene that is mutated. For BRCA1 mutations, the increased risk is estimated to be less than 5%, while BRCA2 mutations may increase a person’s risk of developing pancreatic cancer by approximately 5-10%.
Screening recommendations for each person usually depend on combined factors like family medical history of pancreatic or other cancers, whether a person has any genetic mutations and age. Doctors will also consider the specific type of BRCA mutation that an individual has to determine what screening may be appropriate. Those with BRCA2 mutations are now recommended for screening even if there is no family history of the disease, according to National Comprehensive Cancer Network guidelines.
Any person who is concerned about their risk of inheriting a BRCA1/2 mutation should consult with a genetic counselor. PanCAN Patient Services can answer questions about genetic testing and help you find a genetic counselor in your area.
The U.S. Preventative Services Task Force (USPSTF) recommends against screening for pancreatic cancer in the general population. What are your thoughts on this recommendation? Do you believe it is appropriate, or should it be reconsidered?
It’s difficult to screen the general population for pancreatic cancer at this time. Since the pancreas is deep in the abdomen, doctors usually can’t feel or see the tumor during a physical exam. Current screening options are invasive and expensive. And lastly, since pancreatic cancer is a relatively rare disease, there’s the concern that broad screening using these currently available options can cause unnecessary medical, emotional and financial challenges.
But progress is being made, which could at some point in the future lead to a change in screening recommendations. One area of research is focused on uncovering biomarkers – early biological clues in blood, urine or saliva – that could detect pancreatic cancer without invasive procedures. Another exciting area of research is focused on how artificial intelligence may help with early detection, including applying it to imaging tests to pick up early signs of the disease that the human eye may miss or using it in tandem with electronic health records to identify biomarkers.
Read more about some of the latest developments in early detection research.
