Living with Medullary thyroid carcinoma
A cancer of the thyroid's C-cells, often first seen as a painless, firm lump in the neck.
Understanding Medullary thyroid carcinoma
It is closely linked with multiple endocrine neoplasia syndromes. About 10% to 20% are familial. People usually have a painless, firm thyroid nodule, and lymph node involvement is common at diagnosis. GARD says surgery is the preferred treatment. It is described in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Firm, painless thyroid lump
- Enlarged thyroid with nodules (goiter)
- Swollen lymph nodes
- Diarrhea
- Excess sweating
- Trouble swallowing
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
Alex's Lemonade Stand 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: Alex's Lemonade Stand 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 Alex's Lemonade Stand 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 it is closely linked with multiple endocrine neoplasia syndromes. About 10% to 20% of cases are familial.
Also known as: c cell carcinoma; c cell neuroendocrine neoplasm; carcinoma of parafollicular cell; carcinoma, c-cell, malignant; medullary carcinoma; medullary carcinoma of the thyroid
Patient organizations
- Alex's Lemonade Stand FoundationMedullary thyroid carcinoma · United States
- Neuroendocrine Tumor Research FoundationMedullary thyroid carcinoma · United States
- International Neuroendocrine Cancer AllianceMedullary thyroid carcinoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Medullary thyroid carcinoma.
Explore research for Medullary thyroid carcinoma
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- 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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