Overview
Familial papillary or follicular thyroid carcinoma is a rare inherited form of thyroid cancer that runs in families. Unlike most thyroid cancers, which occur by chance (sporadically), this condition involves two or more close family members developing papillary or follicular thyroid cancer without another known genetic syndrome being the cause. Papillary thyroid carcinoma is the most common type, forming in the cells that produce thyroid hormones, while follicular thyroid carcinoma is the second most common type. Both arise from the follicular cells of the thyroid gland, a butterfly-shaped gland at the base of the neck that controls metabolism. The most common symptom is a painless lump or nodule in the neck. Some people notice swollen lymph nodes, difficulty swallowing, hoarseness, or a feeling of pressure in the throat. In many cases, the cancer is found during a routine physical exam or imaging done for another reason. Familial cases may appear at a younger age and can sometimes be more aggressive than sporadic thyroid cancer, with a higher chance of affecting both sides of the thyroid or spreading to nearby lymph nodes. Treatment typically involves surgery to remove part or all of the thyroid gland (thyroidectomy), often followed by radioactive iodine therapy to destroy any remaining cancer cells. Lifelong thyroid hormone replacement medication is needed after surgery. The overall outlook for most patients is very good, especially when the cancer is caught early. Because this condition runs in families, screening of close relatives is strongly recommended to allow early detection and treatment.
Also known as:
Key symptoms:
Painless lump or nodule in the neckSwollen lymph nodes in the neckDifficulty swallowingHoarseness or voice changesFeeling of pressure or tightness in the throatNeck pain that may spread to the earsPersistent cough not related to a coldVisible swelling at the base of the neckFatigueUnexplained weight changesBreathing difficulty in advanced cases
Clinical phenotype terms (15)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Familial papillary or follicular thyroid carcinoma.
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Specialists
View all specialists →No specialists are currently listed for Familial papillary or follicular thyroid carcinoma.
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 Familial papillary or follicular thyroid carcinoma.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.Should my close family members be screened for thyroid cancer, and at what age should screening begin?,Is genetic testing available for our family, and would it help guide screening or treatment?,What type of surgery do you recommend — total thyroidectomy or partial — and why?,Will I need radioactive iodine therapy after surgery, and what are the side effects?,How often will I need follow-up blood tests and imaging, and for how long?,What are the signs of recurrence I should watch for?,Are there any clinical trials or new treatments available for familial thyroid cancer?
Common questions about Familial papillary or follicular thyroid carcinoma
What is Familial papillary or follicular thyroid carcinoma?
Familial papillary or follicular thyroid carcinoma is a rare inherited form of thyroid cancer that runs in families. Unlike most thyroid cancers, which occur by chance (sporadically), this condition involves two or more close family members developing papillary or follicular thyroid cancer without another known genetic syndrome being the cause. Papillary thyroid carcinoma is the most common type, forming in the cells that produce thyroid hormones, while follicular thyroid carcinoma is the second most common type. Both arise from the follicular cells of the thyroid gland, a butterfly-shaped gla
How is Familial papillary or follicular thyroid carcinoma inherited?
Familial papillary or follicular thyroid carcinoma follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Familial papillary or follicular thyroid carcinoma typically begin?
Typical onset of Familial papillary or follicular thyroid carcinoma is adult. Age of onset can vary across affected individuals.