If you have two or more first-degree relatives who have had pancreatic cancer, a first-degree relative who developed pancreatic cancer before the age of 50, or an inherited genetic syndrome associated with pancreatic cancer, you may have an increased risk of developing pancreatic cancer. The Pancreatic Cancer Action Network strongly recommends consulting with a genetic counselor to determine your risk and eligibility for a screening program.
There is currently no standard diagnostic tool or established early detection method for pancreatic cancer. When diagnosed early, surgical resection offers the best chance for long term control of pancreatic cancer, yet most patients are diagnosed at later stages and are not eligible for surgery. Therefore, tests sensitive enough to detect pancreatic cancer in the earliest stages are urgently needed.
Pancreatic cancer is diagnosed primarily through the use of computed tomography (CT) scans, magnetic resonance imaging (MRI), endoscopic ultrasound (EUS), endoscopic retrograde cholangiopancreatography (ERCP), laparoscopy and biopsy. Unfortunately, these tests have not proven to be 100% effective at detecting small lesions, pre-cancers or early stage cancers, which may be more possible to effectively treat.
For individuals who are at increased risk due to family history or other factors, effective early screening methods are especially important. A blood test that identifies a specific substance in the blood that is highly indicative of cancer, such as the PSA test for prostate cancer, is the ideal early detection method because of ease of use and cost-effectiveness. At institutions across the country, researchers are actively looking for pancreatic cancer biomarkers that can be used in a diagnostic test. Researchers use a variety of methods to find these markers and they are beginning to yield promising results.
Until a reliable early detection test is developed, screening protocols for high-risk individuals are very important. Although many doctors agree that having two or more close family members with pancreatic cancer puts a person at high risk for the disease, there is no consensus as to when, how often and with what methods these individuals should be screened.
Because of the lack of knowledge surrounding early screenings, doctors stress the importance of taking part in investigational studies targeted specifically at populations at high risk for pancreatic cancer. Two types of research programs for high-risk individuals are surveillance programs and family registries.
The goal of surveillance programs is to detect early pancreatic cancer and pre-cancerous lesions in patients who are at high risk for developing pancreatic cancer. Depending on the study, a person is considered high-risk if they have two or more first-degree relatives (sibling, parent or child) who have had pancreatic cancer, if they have a first-degree relative who developed pancreatic cancer before the age of 50, or if they have inherited genetic syndromes associated with pancreatic cancer.
These programs involve regular monitoring of high-risk persons using tests such as EUS, CT scan and/or 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.
When enrolling in surveillance programs, patients should be thoroughly counseled on the potential risks and benefits of screening.
Besides the advantage of having screenings performed by knowledgeable doctors and possibly benefiting from cutting edge diagnostic tests, study participants will undoubtedly help advance the science of early detection. Over the next few years, these studies should provide a wealth of
Information regarding who is at risk, what genes are most involved in developing pancreatic cancer and the best methods for early diagnosis and treatment.
A few institutions have programs in place and others are in the process of developing them. Please contact a Patient Central Associate at 877-272-6226 or firstname.lastname@example.org for more information about surveillance programs. Associates are available Monday – Friday, 7 a.m. to 5 p.m., Pacific Time.
Family registries are collections of patient data that can allow researchers to potentially identify other risk factors and/or genetic conditions associated with the disease. Registries generally are less involved than surveillance programs and only require participants to fill out a questionnaire.
Family registries may not provide direct benefit to the individual or his/her family. Registries examine environmental factors, lifestyle habits and/or history of pancreatic cancer along with the incidence of other cancers in the family. By studying families with an increased incidence, researchers may be able to better understand pancreatic cancer. Both patients and their family members can participate in family registries. In addition to the questionnaire to gather relevant information, some registries also ask participants to provide a blood sample for additional genetic analysis.
The Pancreatic Cancer Action Network has a Patient Registry created to look for patterns in treatments, side effect management and diagnostics that will lead to improved treatment options and outcomes for patients. Patients and caregivers can become our research partners by giving scientists valuable data to dive into, which can lead to new treatment options and improved outcomes.
There are also several institutions throughout the country that currently have active family registries. Please contact a Patient Central Associate for more information and to obtain a list of current family registries.
Using genetic analysis, scientists are looking for specific genes and changes within genes that are associated with pancreatic cancer. Preliminary studies have revealed that a significant number of genes are abnormally active in pancreatic cancer cells. Researchers predict that they will someday be able to isolate these genes in blood samples.
Proteomics is an area of research that involves analyzing samples of biological fluid for patterns of protein expression unique to a specific disease. Proteomic tools are being used to analyze samples of pancreatic juice from pancreatic cancer patients and to look for elevated levels of specific proteins that may be associated with the disease.
Scientists are also analyzing other biological fluids, such as saliva and blood, for biomarkers that are present in patients with pancreatic cancer.
There are also new imaging techniques that are showing promise in detecting pancreatic cancer in its early stages. These techniques allow doctors to look for subtle changes in the cells of the duodenum (part of the small intestine that is next to the pancreas) that would indicate the presence of pancreatic cancer.
A diagnostic test involving any biomarker must be able to distinguish between a person with pancreatic cancer and an unaffected individual with near 100% accuracy. Several markers, including the ones mentioned previously, have been tested as diagnostic tools with promising results. However, the number of patients in the studies has been too small, so the results must be confirmed in additional studies with a larger patient population. It is doubtful that one marker alone will be specific enough to reliably diagnose all types of pancreatic cancer. It is more likely that a group, or panel, of many markers will be combined to create an accurate test.
With continued research, improved technology and increased funding, researchers predict that significant advances in the early detection of pancreatic cancer will be made in the next few years.
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.