On November 10, advocacy organizations, researchers and patients will take a moment to recognize the tremendous progress that has been made in the study and treatment of neuroendocrine tumors (NETs) by observing World NET Cancer Day. We will also take advantage of this day to push for increased support for researchers and patients, wider awareness of this often-overlooked disease, earlier detection and better treatment options.
World NET Cancer Day also gives us the opportunity to remind everyone that PanCAN is here for all people living with all types of pancreatic cancer, including pancreatic neuroendocrine tumors (also known as PNET or PanNET) with free education, resources, personalized clinical trial searches, a community of support and so much more.
When speaking recently with Dr. Jordan Berlin, a long-time member of PanCAN’s Scientific and Medical Advisory Board, he told me, “When I started in this field over 30 years ago, we had one very toxic and ineffective treatment for PNETs.
“Now we have more treatments than ever, a better understanding of the biology of the disease and the future is brighter than ever for people diagnosed with PNET.”
PNETs are rare, making up less than 10% of all tumors of the pancreas. They are often overlooked in diagnosis because most do not cause any noticeable symptoms until the tumor is large enough to cause problems like jaundice and pain. In addition, some PNETs secrete hormones that do cause symptoms early on (like changes in blood sugar, diarrhea, heartburn and others), but they can be difficult to recognize as being caused by an underlying tumor.
Contact PanCAN Patient Services for our comprehensive educational booklet about pancreatic neuroendocrine tumors, covering topics like diagnosis, treatment options, side effects and more. It is available in Spanish and English.
While great progress has already been made in the treatment of PNETs, including targeted therapies and nuclear medicine approaches, the future of PNET treatment will come from clinical trials.
PanCAN strongly recommends consideration of clinical trials at diagnosis and at every treatment decision for people diagnosed with any type of pancreatic cancer. Remember, you should always talk to your doctor about clinical trials, since they know you best and can help you understand eligibility requirements.
PanCAN is here to help, too. PanCAN Patient Services can provide patients with PNETs and their caregivers with accurate, up-to-date information about the diagnosis and treatment of neuroendocrine tumors of the pancreas. Our Clinical Trial Finder database includes trials focused on PNETs. Case Managers can run a personalized search based on an individual’s needs.
While clinical research fuels the future of PNET treatment, meaningful progress also happens through support, education and connection. Community is an important part of the cancer journey and PanCAN is dedicated to building connections among everyone impacted by pancreatic cancer. We work toward this goal through our dedicated volunteer network and resources like the Survivor and Caregiver Network.
Exciting new partnerships are also helping PanCAN toward our north star of making sure no one faces pancreatic cancer alone. We recently announced our collaboration with Smart Patients to launch a new, secure online community for patients with pancreatic cancer and their caregivers. This platform allows individuals to connect, offer mutual support, and includes a specialized forum for those living with PNETs. This unique PNETs forum helps people with this rare disease find each other and share their experiences.
Smart Patients also hosts experts who engage with the community, allowing members to ask questions and receive insights directly from people on the frontlines of PNET research and treatment.
The momentum behind progress in PNET research brings real reason for hope. However, our mission is not complete until every person facing this rare disease feels supported. Together with the dedication of researchers, advocates and the PanCAN community, we can make that hope a reality.
