Neuroendocrine neoplasm of esophagus

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1FDA treatments18Specialists8Treatment centers1Financial resources

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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.

Also known as:

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)

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

1 available

Photofrin

porfimer· Axcan Scandipharm Inc.
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

No actively recruiting trials found for Neuroendocrine neoplasm of esophagus at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Neuroendocrine neoplasm of esophagus community →

Specialists

18 foundView all specialists →
DM
Daniel Fowler, M.D.
Boston, Massachusetts
Specialist

Rare Disease Specialist

PI on 2 active trials
DM
David Hong, MD
Specialist
PI on 5 active trials
JC
Jeremie Calais
LOS ANGELES, CA
Specialist
PI on 4 active trials
NM
Nina Merchant
Specialist
PI on 1 active trial
SM
Scot C. Remick, MD
SCARBOROUGH, ME
Specialist
PI on 9 active trials
LH
Lyndsay N Harris
Specialist
PI on 1 active trial76 Neuroendocrine neoplasm of esophagus publications
LM
Lin Shen, MD
Specialist
PI on 8 active trials1 Neuroendocrine neoplasm of esophagus publication
MM
Melissa Reimers, M.D.
SAINT LOUIS, MO
Specialist
PI on 1 active trial
DZ
Dan P Zandberg
BALTIMORE, MD
Specialist
PI on 2 active trials
LH
Lily Hu
TAUNTON, MA
Specialist
PI on 3 active trials158 Neuroendocrine neoplasm of esophagus publications
RM
Russell S. Phillips, MD
Specialist
PI on 1 active trial
SM
Shegan Gao, MD,pHD
Luoyang, Henan
Specialist

Rare Disease Specialist

PI on 2 active trials
MF
Michelle Ferretti
BOSTON, MA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

1 resources
Photofrin(porfimer)Axcan Scandipharm Inc.

Travel Grants

No travel grants are currently matched to Neuroendocrine neoplasm of esophagus.

Search all travel grants →NORD Financial Assistance ↗

Community

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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.