Overview
Neuroendocrine carcinoma of the pancreas (also called pancreatic neuroendocrine carcinoma, or NEC of the pancreas) is a rare and aggressive type of cancer that starts in the hormone-producing cells of the pancreas. The pancreas has two main jobs: helping with digestion and making hormones like insulin that control blood sugar. Neuroendocrine carcinomas arise from the cells that make these hormones, but unlike the more common and slower-growing pancreatic neuroendocrine tumors (PNETs), neuroendocrine carcinomas grow and spread quickly. They are considered high-grade, meaning the cancer cells look very abnormal and divide rapidly. This cancer can cause a wide range of symptoms depending on whether it releases hormones into the bloodstream. Some tumors are 'functional' and produce hormones that cause noticeable symptoms like low blood sugar or diarrhea. Others are 'non-functional' and may not cause symptoms until the tumor grows large or spreads. Common symptoms include abdominal pain, unexplained weight loss, nausea, and fatigue. Treatment usually involves a combination of surgery (when possible), chemotherapy, and sometimes targeted therapies. Because this cancer is aggressive and often diagnosed at a late stage, treatment focuses on controlling the disease and improving quality of life. A team of specialists works together to create a personalized plan for each patient.
Also known as:
Key symptoms:
Abdominal or upper belly painUnexplained weight lossNausea and vomitingLoss of appetiteFatigue and weaknessJaundice (yellowing of the skin or eyes)Episodes of low blood sugar (shakiness, sweating, confusion)Diarrhea or changes in bowel habitsNew or worsening diabetesA lump or mass felt in the abdomenBack painFlushing or redness of the face and neck
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsAbramson Cancer Center at Penn Medicine — PHASE1
Inkeun Park — PHASE2
CSPC ZhongQi Pharmaceutical Technology Co., Ltd. — PHASE2
Milton S. Hershey Medical Center — NA
Vector Vitale LLC — PHASE1, PHASE2
N.N. Petrov National Medical Research Center of Oncology — PHASE2
Regina Elena Cancer Institute
IRCCS San Raffaele
Sociedad Española de Medicina Nuclear e Imagen Molecular
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Neuroendocrine carcinoma of pancreas.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
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
Travel Grants
No travel grants are currently matched to Neuroendocrine carcinoma of pancreas.
Community
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Start the conversation →Latest news about Neuroendocrine carcinoma of pancreas
1 articlesCaregiver Resources
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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 stage is my cancer, and has it spread to other organs?,Is surgery an option for me, and what would that involve?,What chemotherapy regimen do you recommend, and what side effects should I expect?,Should I have genetic testing to see if a hereditary syndrome might be involved?,Are there any clinical trials I might be eligible for?,How will we know if the treatment is working, and how often will I be monitored?,What palliative care or supportive services are available to help manage my symptoms and quality of life?
Common questions about Neuroendocrine carcinoma of pancreas
What is Neuroendocrine carcinoma of pancreas?
Neuroendocrine carcinoma of the pancreas (also called pancreatic neuroendocrine carcinoma, or NEC of the pancreas) is a rare and aggressive type of cancer that starts in the hormone-producing cells of the pancreas. The pancreas has two main jobs: helping with digestion and making hormones like insulin that control blood sugar. Neuroendocrine carcinomas arise from the cells that make these hormones, but unlike the more common and slower-growing pancreatic neuroendocrine tumors (PNETs), neuroendocrine carcinomas grow and spread quickly. They are considered high-grade, meaning the cancer cells lo
How is Neuroendocrine carcinoma of pancreas inherited?
Neuroendocrine carcinoma of pancreas follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neuroendocrine carcinoma of pancreas typically begin?
Typical onset of Neuroendocrine carcinoma of pancreas is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Neuroendocrine carcinoma of pancreas?
Yes — 1 recruiting clinical trial is currently listed for Neuroendocrine carcinoma of pancreas on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Neuroendocrine carcinoma of pancreas?
25 specialists and care centers treating Neuroendocrine carcinoma of pancreas are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.