Living with Inflammatory myofibroblastic tumor
An uncommon, usually noncancerous tumor that can grow in many parts of the body, most often in children and young adults.
Understanding Inflammatory myofibroblastic tumor
It usually develops in children or young adults but can affect anyone. It is most common in the lung, eye socket, belly lining (peritoneum), and mesentery. Some people have no symptoms; others have breathing symptoms, fever, or pain. IMTs may come back or spread, but cancerous ones are rare.
Signs & symptoms
Symptoms vary depending on where the tumor is. GARD says people may have:
- No symptoms
- Breathing symptoms
- Fever
- Pain
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 underlying cause is poorly understood. Some cases have been linked to changes (translocations) involving the ALK gene.
Also known as: imt; inflammatory fibrosarcoma; inflammatory myofibroblastic neoplasm; inflammatory pseudotumor
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Inflammatory myofibroblastic tumor.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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