Overview
A non-functioning neuroendocrine tumor of the pancreas (also called a non-functional pancreatic NET, NF-pNET, or non-secreting pancreatic neuroendocrine tumor) is a rare type of slow-growing cancer that starts in the hormone-producing cells of the pancreas. Unlike some pancreatic tumors, these do not release hormones in amounts large enough to cause obvious hormone-related symptoms. This makes them especially tricky to detect early, because people often feel fine until the tumor grows quite large or spreads to other organs. The pancreas sits deep in the abdomen and plays a key role in digestion and blood sugar control. When a non-functioning neuroendocrine tumor grows there, it can press on nearby structures, causing belly pain, weight loss, or jaundice (yellowing of the skin). Because symptoms are vague and come on slowly, many tumors are found by accident during scans done for other reasons. Treatment depends on the size of the tumor, whether it has spread, and the patient's overall health. Surgery to remove the tumor is the main treatment when possible and can sometimes be curative. For tumors that cannot be removed or have spread, options include targeted drug therapies, somatostatin analogs, chemotherapy, and procedures to treat liver spread. With the right care, many people with this diagnosis live for many years, especially when the tumor is caught at an early stage.
Also known as:
Key symptoms:
Dull or aching pain in the upper belly or backUnexplained weight lossYellowing of the skin or eyes (jaundice)Feeling full quickly when eatingNausea or vomitingA lump or mass that can sometimes be felt in the abdomenFatigue and low energyLoss of appetitePale or greasy stoolsDark urineNew-onset diabetes or worsening blood sugar controlSwelling in the abdomen
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventRETEVMO: FDA approved
treatment of adult and pediatric patients 2 years of age and older with advanced or metastatic medullary thyroid cancer (MTC) with a RET mutation, as detected by an FDA-approved test, who require systemic therapy; and treatment of adult and pediatric patients 2 years of age and older with advanced or metastatic thyroid cancer with a RET gene fusion, as detected by an FDA-approved test, who require systemic therapy and who are radioactive iodine-refractory (if radioactive iodine is appropriate)
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Non-functioning neuroendocrine tumor of pancreas.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Non-functioning neuroendocrine tumor of pancreas at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesRETEVMO
Loxo Oncology Inc., a wholly owned subsidiary of Eli Lilly and Company
RETEVMO Patient Support (Lilly Cares)
Travel Grants
No travel grants are currently matched to Non-functioning neuroendocrine tumor of pancreas.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the grade and stage of my tumor, and what does that mean for my prognosis?,Is surgery an option for me, and if so, what are the risks and expected recovery?,Should I be tested for a hereditary syndrome like MEN1 or VHL, and should my family members be tested too?,What imaging and lab tests will I need for follow-up, and how often?,Are there clinical trials I might be eligible for?,If my tumor is being watched without immediate treatment, what signs should prompt me to call you right away?,How might treatment affect my digestion, blood sugar, and daily life, and what support is available?
Common questions about Non-functioning neuroendocrine tumor of pancreas
What is Non-functioning neuroendocrine tumor of pancreas?
A non-functioning neuroendocrine tumor of the pancreas (also called a non-functional pancreatic NET, NF-pNET, or non-secreting pancreatic neuroendocrine tumor) is a rare type of slow-growing cancer that starts in the hormone-producing cells of the pancreas. Unlike some pancreatic tumors, these do not release hormones in amounts large enough to cause obvious hormone-related symptoms. This makes them especially tricky to detect early, because people often feel fine until the tumor grows quite large or spreads to other organs. The pancreas sits deep in the abdomen and plays a key role in digesti
At what age does Non-functioning neuroendocrine tumor of pancreas typically begin?
Typical onset of Non-functioning neuroendocrine tumor of pancreas is adult. Age of onset can vary across affected individuals.
Which specialists treat Non-functioning neuroendocrine tumor of pancreas?
7 specialists and care centers treating Non-functioning neuroendocrine tumor of pancreas are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Non-functioning neuroendocrine tumor of pancreas?
1 patient support program are currently tracked on UniteRare for Non-functioning neuroendocrine tumor of pancreas. See the treatments and support programs sections for copay assistance, eligibility, and contact details.