Living with Hereditary neuroendocrine tumor of small intestine
An inherited condition with several slow-growing tumors in the small intestine.
Understanding Hereditary neuroendocrine tumor of small intestine
It looks the same as non-inherited carcinoids and can cause belly pain, flushing, and diarrhea, often after a long time with no symptoms. Most people have low-grade tumors. Carcinoids in the lungs have also been reported.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, it can include:
- Belly pain
- Flushing of the skin
- Diarrhea
- Several tumors in the small intestine
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, digestive system specialists and genetic specialists.
- 3Consider genetic testing
Changes in IPMK are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Neuroendocrine Tumor Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: 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 Neuroendocrine Tumor Research 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
It is caused by changes in the IPMK gene. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: hereditary neuroendocrine tumor of small bowel; hereditary neuroendocrine tumor of the small intestine; hereditary neuroendocrine tumour of small bowel; hereditary neuroendocrine tumour of the small intestine; hereditary small intestine neuroendocrine neoplasm
Patient organizations
- Neuroendocrine Tumor Research FoundationHereditary neuroendocrine tumor of small intestine · United States
- The Healing NET FoundationHereditary neuroendocrine tumor of small intestine · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary neuroendocrine tumor of small intestine.
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