Overview
Anaplastic thyroid carcinoma (ATC), also called undifferentiated thyroid cancer, is one of the rarest and most aggressive forms of cancer. It starts in the thyroid gland, a butterfly-shaped gland in the front of your neck that controls your metabolism and many body functions. Unlike other thyroid cancers that grow slowly, anaplastic thyroid carcinoma grows very fast and can spread quickly to nearby structures in the neck and to other parts of the body such as the lungs, bones, and brain. The most common symptom is a rapidly growing lump or mass in the neck that can feel hard and fixed in place. As the tumor grows, it can press on the windpipe and food pipe, making it hard to breathe or swallow. Some people also experience a hoarse voice, pain in the neck, or swollen lymph nodes. Because the tumor grows so quickly, symptoms often develop over just a few weeks. Treatment usually involves a combination of surgery, radiation therapy, and chemotherapy, though the cancer is often too advanced for surgery by the time it is found. Newer targeted therapies, including drugs that target specific gene changes in the tumor, have shown promise and are changing how this disease is treated. Despite these advances, anaplastic thyroid carcinoma remains very difficult to treat, and finding it as early as possible gives the best chance of a better outcome.
Key symptoms:
Rapidly growing lump or swelling in the front of the neckDifficulty breathing or shortness of breathDifficulty swallowing food or liquidsHoarse or changed voicePain or pressure in the neckSwollen lymph nodes in the neckCoughing, sometimes with bloodFeeling of tightness in the throatUnexplained weight lossFatigue and general weaknessFever in some cases
Clinical phenotype terms (23)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Late onset
Begins later in life, typically after age 50
FDA & Trial Timeline
10 eventsM.D. Anderson Cancer Center — PHASE2
Radboud University Medical Center — PHASE1
Karolinska University Hospital — EARLY_PHASE1
Hospices Civils de Lyon — PHASE2
National Health Research Institutes, Taiwan
UNC Lineberger Comprehensive Cancer Center — PHASE1
Zhejiang Provincial People's Hospital — PHASE1, PHASE2
West China Hospital — PHASE2
Grupo Espanol de Tumores Neuroendocrinos — PHASE2
Power Life Sciences Inc.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableTafinlar Capsules and Mekinist Tablets
indicated, in combination with dabrafenib and trametinib, for the treatment of patients with locally advanced or metastatic anaplastic thyroid cancer (ATC) with BRAF V600E mutation and with no satisfa…
indicated, in combination with dabrafenib and trametinib, for the treatment of patients with locally advanced or metastatic anaplastic thyroid cancer (ATC) with BRAF V600E mutation and with no satisfactory locoregional treatment options
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
Travel Grants
No travel grants are currently matched to Anaplastic thyroid carcinoma.
Community
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Start the conversation →Latest news about Anaplastic thyroid carcinoma
Disease timeline:
New recruiting trial: Dabrafenib, Trametinib, and IMRT in Treating Patients With BRAF Mutated Anaplastic Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: Sacituzumab govitEcan in THYroid Cancers
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: XL092 and Cemiplimab in BRAF WT Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: GETNE Registration of Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: Efficacy of Pembrolizumab and Lenvatinib in Patients With Anaplastic Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: A Study of Avutometinib and Defactinib in People With Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: NEO- and Adjuvant Targeted Therapy in Braf-mutated Anaplastic Cancer of the Thyroid (NEO-ATACT Study)
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: Sacituzumab Tirumotecan Combined With Immunotherapy in Advanced Thyroid Cancer
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: IMMUNORARE5: A National Platform of 5 Academic Phase II Trials Coordinated by Lyon University Hospital to Assess the Safety and the Efficacy of the IMMUNOtherapy With Domvanalimab + Zimberelimab Combination in Patients With Advanced RARE Cancers
A new clinical trial is recruiting patients for Anaplastic thyroid carcinoma
New recruiting trial: Study of the Rechallenge Concept in Patients With BRAF-positive Anaplastic Thyroid Cancer After Progression on Anti-BRAF Therapy
A new clinical trial is recruiting patients for Anaplastic 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.Has my tumor been tested for the BRAF V600E mutation and other gene changes, and what did those results show?,Am I a candidate for surgery, and if not, what is the plan for local control of the tumor?,Are there any clinical trials I might be eligible for?,What is the goal of treatment — to try to cure the cancer, slow it down, or focus on comfort?,How will we manage symptoms like difficulty breathing and swallowing as the disease progresses?,When should I involve a palliative care team, and what can they offer me?,What support resources are available for me and my family during this time?
Common questions about Anaplastic thyroid carcinoma
What is Anaplastic thyroid carcinoma?
Anaplastic thyroid carcinoma (ATC), also called undifferentiated thyroid cancer, is one of the rarest and most aggressive forms of cancer. It starts in the thyroid gland, a butterfly-shaped gland in the front of your neck that controls your metabolism and many body functions. Unlike other thyroid cancers that grow slowly, anaplastic thyroid carcinoma grows very fast and can spread quickly to nearby structures in the neck and to other parts of the body such as the lungs, bones, and brain. The most common symptom is a rapidly growing lump or mass in the neck that can feel hard and fixed in plac
How is Anaplastic thyroid carcinoma inherited?
Anaplastic thyroid carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Anaplastic thyroid carcinoma typically begin?
Typical onset of Anaplastic thyroid carcinoma is late onset. Age of onset can vary across affected individuals.
Are there clinical trials for Anaplastic thyroid carcinoma?
Yes — 18 recruiting clinical trials are currently listed for Anaplastic 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 Anaplastic thyroid carcinoma?
25 specialists and care centers treating Anaplastic thyroid carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.