Living with Neuroendocrine neoplasm
A tumor (carcinoid tumor) of hormone-making cells that usually forms in the digestive tract or lungs.
Understanding Neuroendocrine neoplasm
It can also develop in other places, such as the pancreas, testicle, or ovary. Symptoms depend on where the tumor is, and may appear only in later stages. A digestive tract tumor may cause symptoms only if it has spread to the liver. Tumors can release hormone-like substances that cause carcinoid syndrome. GARD lists onset in adulthood.
Signs & symptoms
GARD doesn't list a symptom list, but the summary describes these features:
- Flushing of the face and chest
- Diarrhea
- Trouble breathing
- Coughing or wheezing (lung tumors)
- Pneumonia (lung tumors)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Carcinoid Cancer Foundation, GO2 Foundation for Lung Cancer and Neuroendocrine Tumor Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Carcinoid Cancer Foundation, GO2 Foundation for Lung Cancer, Neuroendocrine Tumor Research Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Carcinoid Cancer Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cause is unknown. Certain unavoidable risk factors may increase a person's chance of developing it.
Also known as: apudoma; nen - neuroendocrine neoplasm; neuroendocrine neoplasia; neuroendocrine tumor; neuroendocrine tumour; well-differentiated neuroendocrine tumor
Patient organizations
- Carcinoid Cancer FoundationNeuroendocrine neoplasm · United States
- GO2 Foundation for Lung CancerNeuroendocrine neoplasm · United States
- Neuroendocrine Tumor Research FoundationNeuroendocrine neoplasm · United States
- American Cancer SocietyNeuroendocrine neoplasm · United States
- International Neuroendocrine Cancer AllianceNeuroendocrine neoplasm · United States
- Learn Advocate Connect Neuroendocrine Tumor SocietyNeuroendocrine neoplasm · United States
- Neuroendocrine Cancer Awareness NetworkNeuroendocrine neoplasm · United States
- PancreaticaNeuroendocrine neoplasm · United States
You are more than your diagnosis
Perspectives from people navigating life with Neuroendocrine neoplasm.
Explore research for Neuroendocrine neoplasm
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