Overview
A neuroendocrine neoplasm of the esophagus (also called esophageal neuroendocrine tumor, or esophageal NET/NEN) is a rare type of cancer that starts in the hormone-producing nerve cells lining the esophagus — the tube that carries food from your mouth to your stomach. These tumors grow from special cells called neuroendocrine cells, which normally help control digestion by releasing hormones and chemical signals. Because these cells are scattered throughout the digestive tract, tumors can form anywhere along it, but the esophagus is one of the least common sites. Most esophageal neuroendocrine neoplasms are high-grade (aggressive) tumors, often called small cell carcinoma or large cell neuroendocrine carcinoma of the esophagus. They tend to grow and spread quickly, which means they are often found at an advanced stage. Symptoms can include difficulty swallowing, unintentional weight loss, chest pain or discomfort, and sometimes a persistent cough or hoarseness. Some tumors may release hormones that cause additional symptoms throughout the body. Treatment usually involves a combination of chemotherapy, radiation therapy, and sometimes surgery, depending on how far the cancer has spread. Because this is such a rare tumor, treatment is often guided by approaches used for similar neuroendocrine cancers in other parts of the body. Research is ongoing, and patients are often encouraged to seek care at specialized cancer centers with experience in rare gastrointestinal tumors.
Key symptoms:
Difficulty swallowing (food feels stuck or painful going down)Unintentional weight lossChest pain or pressurePersistent cough or hoarsenessNausea or vomitingHeartburn or acid reflux that does not improveFeeling full quickly when eatingFatigue and low energyCoughing up blood or blood in vomitBack pain (if tumor has spread)
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
1 availablePhotofrin
Palliation of patients with completely obstructing esophageal cancer, or of patients with partially obstructing esophageal cancer who, in the opinion of their healthcare provider, cannot be satisfacto…
Palliation of patients with completely obstructing esophageal cancer, or of patients with partially obstructing esophageal cancer who, in the opinion of their healthcare provider, cannot be satisfactorily treated with Nd:YAG laser therapy
Clinical Trials
View all trials with filters →No actively recruiting trials found for Neuroendocrine neoplasm of esophagus at this time.
New trials open frequently. Follow this disease to get notified.
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
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Neuroendocrine neoplasm of esophagus.
Community
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Start the conversation →Latest news about Neuroendocrine neoplasm of esophagus
Disease timeline:
New trial: Clinical Study on the Impact of Eradication of Oral Porphyromonas Gingivalis on the Prognosis of Ear
Phase NA trial recruiting. Ultrasonic teeth cleaning plus Tinidazole microneedle patches applying
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 grade and stage is my tumor, and what does that mean for my treatment options?,Is surgery an option for me, or is chemotherapy and radiation the main approach?,Are there any clinical trials I might be eligible for?,Should I be seen at a specialized neuroendocrine tumor center?,What are the goals of treatment — is cure possible, or is the focus on controlling the cancer?,How will treatment affect my ability to eat and swallow, and what nutritional support is available?,What signs or symptoms should prompt me to call you or go to the emergency room?
Common questions about Neuroendocrine neoplasm of esophagus
What is Neuroendocrine neoplasm of esophagus?
A neuroendocrine neoplasm of the esophagus (also called esophageal neuroendocrine tumor, or esophageal NET/NEN) is a rare type of cancer that starts in the hormone-producing nerve cells lining the esophagus — the tube that carries food from your mouth to your stomach. These tumors grow from special cells called neuroendocrine cells, which normally help control digestion by releasing hormones and chemical signals. Because these cells are scattered throughout the digestive tract, tumors can form anywhere along it, but the esophagus is one of the least common sites. Most esophageal neuroendocrin
How is Neuroendocrine neoplasm of esophagus inherited?
Neuroendocrine neoplasm of esophagus follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neuroendocrine neoplasm of esophagus typically begin?
Typical onset of Neuroendocrine neoplasm of esophagus is adult. Age of onset can vary across affected individuals.
Which specialists treat Neuroendocrine neoplasm of esophagus?
18 specialists and care centers treating Neuroendocrine neoplasm of esophagus are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Neuroendocrine neoplasm of esophagus?
1 patient support program are currently tracked on UniteRare for Neuroendocrine neoplasm of esophagus. See the treatments and support programs sections for copay assistance, eligibility, and contact details.