Overview
Medullary thyroid carcinoma (MTC) is a type of thyroid cancer that starts in special cells in the thyroid gland called C cells (also called parafollicular cells). These cells normally make a hormone called calcitonin, which helps control calcium levels in the blood. When C cells grow out of control, they form a tumor that can spread to nearby lymph nodes and, in some cases, to other parts of the body like the liver, lungs, or bones. MTC is different from the more common types of thyroid cancer because it does not respond to radioactive iodine treatment. It makes up about 3 to 4 percent of all thyroid cancers. About 75 percent of cases are sporadic, meaning they happen by chance with no family history. The other 25 percent are hereditary, meaning they are passed down in families and are linked to a condition called Multiple Endocrine Neoplasia type 2 (MEN2), which includes MEN2A and MEN2B, or Familial Medullary Thyroid Carcinoma (FMTC). Common symptoms include a lump or swelling in the neck, trouble swallowing, hoarseness, and sometimes diarrhea caused by high calcitonin levels. The main treatment is surgery to remove the thyroid gland. For advanced or spreading disease, targeted drug therapies are available. When caught early, the outlook can be very good, but late-stage disease is harder to treat.
Also known as:
Key symptoms:
A painless lump or nodule in the front of the neckSwollen lymph nodes in the neckHoarse or changed voiceDifficulty swallowingDifficulty breathingPersistent diarrhea (caused by high calcitonin levels)Flushing or redness of the faceNeck pain that may spread to the earUnexplained weight lossFatigueIn MEN2A: symptoms of high calcium (kidney stones, bone pain, muscle weakness) from overactive parathyroid glandsIn MEN2A/MEN2B: high blood pressure or rapid heartbeat from adrenal tumors (pheochromocytoma)
Clinical phenotype terms (14)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsCity of Hope Medical Center — PHASE3
Rutgers, The State University of New Jersey — PHASE2
All India Institute of Medical Sciences, Bhubaneswar — PHASE4
IRCCS Azienda Ospedaliero-Universitaria di Bologna
H. Lee Moffitt Cancer Center and Research Institute — PHASE1
AC.TA. S.r.l. — NA
Patrick Wagner, MD, FACS — PHASE2
First Affiliated Hospital of Wenzhou Medical University — PHASE2
Cancer Institute and Hospital, Chinese Academy of Medical Sciences — PHASE3
UroGen Pharma Ltd. — PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableCAPRELSA(r)
indicated for the treatment of symptomatic or progressive medullary thyroid cancer in patients with unresectable locally advanced or metastatic disease
RETEVMO
RETEVMO is indicated for the treatment of adult and pediatric patients 2 years of age and older with advanced or metastatic medullary thyroid cancer (MTC) with a RET mutation, as detected by an FDA-ap…
RETEVMO is indicated for the treatment of adult and pediatric patients 2 years of age and older with advanced or metastatic medullary thyroid cancer (MTC) with a RET mutation, as detected by an FDA-approved test, who require systemic therapy
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Medullary thyroid carcinoma.
Community
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Start the conversation →Latest news about Medullary thyroid carcinoma
Disease timeline:
New recruiting trial: Clinical Trial With Donor Modified Immune Cells in Living Donor Kidney Transplantation
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: Investigating the Efficacy and Safety of Neoadjuvant Intravesical Instillation of Mitomycin C in Treating High-risk NMIBC Patients
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: A First-in-Human Escalation and Expansion Study of Patients With Advanced Solid Tumors
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: A Phase 3 Single-arm Study of UGN-104 for the Treatment of Low-grade Upper Tract Urothelial Cancer
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: Clinical Trial on HIPEC with Mitomycin C in Colon Cancer Peritoneal Metastases (GECOP-MMC)
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: Heated Versus Aerosol-based Laparoscopic Chemotherapy for Cancer That Has Spread to the Peritoneum (Abdominal Lining)
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: Intracameral Versus Intravitreal Bevacizumab Injection in NVG: RCT
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: uTRACT Jelmyto Registry: A Registry of Patients With Upper Tract Urothelial Cancer (UTUC) Treated With Jelmyto
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: MTC Versus FMT in for RCDI
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
New recruiting trial: HYbrid RObotic Surgery MulTiCentric Study
A new clinical trial is recruiting patients for Medullary thyroid carcinoma
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Should I have genetic testing for the RET gene, and what does a positive result mean for me and my family?,Has my cancer spread beyond the thyroid, and what staging tests do I need?,What type of surgery do you recommend, and will lymph nodes be removed?,After surgery, how will we monitor for cancer coming back, and how often will I need blood tests and scans?,If my cancer is advanced or comes back, which targeted drug therapies would be appropriate for me?,Should my children, siblings, or parents be tested for a RET mutation?,Are there any clinical trials I should consider?
Common questions about Medullary thyroid carcinoma
What is Medullary thyroid carcinoma?
Medullary thyroid carcinoma (MTC) is a type of thyroid cancer that starts in special cells in the thyroid gland called C cells (also called parafollicular cells). These cells normally make a hormone called calcitonin, which helps control calcium levels in the blood. When C cells grow out of control, they form a tumor that can spread to nearby lymph nodes and, in some cases, to other parts of the body like the liver, lungs, or bones. MTC is different from the more common types of thyroid cancer because it does not respond to radioactive iodine treatment. It makes up about 3 to 4 percent of all
Are there clinical trials for Medullary thyroid carcinoma?
Yes — 16 recruiting clinical trials are currently listed for Medullary thyroid carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Medullary thyroid carcinoma?
25 specialists and care centers treating Medullary thyroid carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Medullary thyroid carcinoma?
2 patient support programs are currently tracked on UniteRare for Medullary thyroid carcinoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.