Living with Carcinoid syndrome
A set of symptoms, like diarrhea and facial flushing, caused by hormones released from a certain type of tumor.
Understanding Carcinoid syndrome
It usually causes more bowel movements and diarrhea, and episodes of flushing, especially of the face. Over time it can also cause scar-like (fibrotic) changes in the abdomen and in the heart valves. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Long-lasting diarrhea
- Episodes of belly pain
- Night sweats
- Skin flushing and red patches
- Carcinoid tumor in the intestine
- Wheezing or trouble breathing
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 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, 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
GARD says the symptoms come from substances released by a functional neuroendocrine tumor. GARD doesn't describe what causes the tumor itself.
Also known as: carcinoid tumor syndrome; excessive serotonin secretion; hormonal tumor; hormone secretion by carcinoid tumor; malignant carcinoid syndrome
Patient organizations
- Carcinoid Cancer FoundationCarcinoid syndrome · United States
- Neuroendocrine Tumor Research FoundationCarcinoid syndrome · United States
- International Neuroendocrine Cancer AllianceCarcinoid syndrome · United States
- Learn Advocate Connect Neuroendocrine Tumor SocietyCarcinoid syndrome · United States
- Neuroendocrine Cancer Awareness NetworkCarcinoid syndrome · United States
- The Healing NET FoundationCarcinoid syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Carcinoid syndrome.
Explore research for Carcinoid syndrome
Explore actively recruiting Carcinoid syndrome studies with HealthSpark.
Find actively recruiting studies for Carcinoid syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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