Embryonal carcinoma

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ORPHA:180226C22.7C71.9
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1FDA treatments54Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Embryonal carcinoma is a highly malignant germ cell tumor that represents one of the most undifferentiated and aggressive forms of nonseminomatous germ cell neoplasms. It most commonly arises in the gonads (particularly the testes in young men), but can also occur in extragonadal sites including the mediastinum, retroperitoneum, and, more rarely, the central nervous system and liver — as reflected by the associated ICD-10 codes C71.9 (brain) and C22.7 (liver). The tumor is composed of primitive, pluripotent cells that can differentiate into other germ cell tumor components, including teratoma, yolk sac tumor, and choriocarcinoma. Embryonal carcinoma cells are characteristically positive for markers such as OCT3/4, CD30, and cytokeratins. Clinical presentation depends on the site of origin. Testicular embryonal carcinoma typically presents as a painless or painful testicular mass, sometimes accompanied by symptoms of metastatic disease such as back pain, cough, or lymphadenopathy. Extragonadal presentations may include symptoms related to mass effect at the primary site, such as headaches and neurological deficits for intracranial tumors, or abdominal pain and hepatomegaly for hepatic involvement. Elevated serum tumor markers, including alpha-fetoprotein (AFP) and human chorionic gonadotropin (hCG), may be present and are useful for diagnosis and monitoring. Treatment typically involves a multimodal approach. For testicular embryonal carcinoma, radical inguinal orchiectomy is the primary surgical intervention, followed by cisplatin-based combination chemotherapy (such as BEP: bleomycin, etoposide, and cisplatin), which has significantly improved survival outcomes. Retroperitoneal lymph node dissection may also be performed depending on staging and residual disease. For extragonadal embryonal carcinomas, treatment strategies are adapted based on location but generally follow similar chemotherapy principles. With modern treatment, cure rates for localized disease are high, though advanced or refractory cases carry a more guarded prognosis.

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Apr 2026Trial of FOLFIRI + Zimberelimab + Domvanalimab vs FOLFIRI With a Hybrid Synthetic Control Arm in Second Line Treatment of Neuroendocrine Carcinoma of Gastro-enteropancreatic or Unknown Origin (REWENEC 01)

Hospices Civils de Lyon — PHASE2

TrialNOT YET RECRUITING
Mar 2026A Study of 177Lu-DTPA-SC16.56 in People With Neuroendocrine Carcinomas of the Lung and Prostate

Memorial Sloan Kettering Cancer Center — PHASE1

TrialNOT YET RECRUITING
Feb 2026Tarlatamab vs Standard of Care Chemotherapy in Patients With Pre-treated Advanced, Pulmonary or Gastroenteropancreatic Poorly Differentiated Neuroendocrine Carcinomas (NECs)

Intergroupe Francophone de Cancerologie Thoracique — PHASE3

TrialRECRUITING
Dec 2025DLL3-Targeted PET/CT in Neuroendocrine Carcinoma

The First Affiliated Hospital of Xiamen University — NA

TrialRECRUITING
Aug 2025A Community-based Educational Initiative to Raise Awareness of Melanoma and Other Skin Cancers.

NYU Langone Health — NA

TrialACTIVE NOT RECRUITING
May 2025SVV-001 With Nivolumab and Ipilimumab in Patients With Poorly Differentiated Neuroendocrine Carcinomas (NEC) or Well-Differentiated High-Grade Neuroendocrine Tumors (NET)

Peter Hosein, MD — PHASE1

TrialRECRUITING
Apr 2025Single-Center Trial on Ketogenic Diet and Immunotherapy in Advanced Cancer This Study Evaluates the Safety and Effects of a Ketogenic Diet (KD) Combined With Immunotherapy in Adults With Advanced Melanoma, cSCC, or RCC.

Rabin Medical Center — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jul 2024Irinotecan Liposomes for the Treatment of Neuroendocrine Carcinoma

First Affiliated Hospital Xi'an Jiaotong University — PHASE4

TrialNOT YET RECRUITING
Dec 2023Phase II Trial of Neoadjuvant and Adjuvant IO102-IO103 and Pembrolizumab KEYTRUDA® in Patients With Resectable Tumors

IO Biotech — PHASE2

TrialRECRUITING
Apr 2020Phase 2 Trial of Voyager V1 in Combination With Cemiplimab in Cancer Patients

Vyriad, Inc. — PHASE2

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

1 available

Blenoxane

Bleomycin sulfate· Bristol-Myers Squibb Pharmaceutical Research Institute■ Boxed Warning

management of Testicular Carcinoma, embryonal cell

No actively recruiting trials found for Embryonal carcinoma at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Embryonal carcinoma community →

Specialists

Showing 25 of 54View all specialists →
VM
Veronica Mollica
Specialist
2 Embryonal carcinoma publications
NT
Naoki Terada
Specialist
2 Embryonal carcinoma publications
FM
Francesco Massari
BOSTON, MA
Specialist
2 Embryonal carcinoma publications
HI
Hirohito Ishigaki
Specialist
1 Embryonal carcinoma publication
MK
Motohiro Kobayashi
Specialist
2 Embryonal carcinoma publications
HH
Hitomi Hoshino
Specialist
2 Embryonal carcinoma publications
CR
Costantino Ricci
Specialist
2 Embryonal carcinoma publications
AM
Akifumi Muramoto
Specialist
2 Embryonal carcinoma publications
MF
Michelangelo Fiorentino
Specialist
2 Embryonal carcinoma publications
SI
So Inamura
Specialist
2 Embryonal carcinoma publications
MS
Mikhail Samsonov
Specialist
PI on 17 active trials
JM
James L Gulley, M.D.
BETHESDA, MD
Specialist
PI on 7 active trials
PM
Paul Martin
Specialist
PI on 3 active trials73 Embryonal carcinoma publications
PP
Pasi A Janne, MD, PhD
BOSTON, MA
Specialist
PI on 2 active trials
DM
David S Schrump, M.D.
BETHESDA, MD
Specialist
PI on 19 active trials
JM
Jaydira Del Rivero, M.D.
Specialist
PI on 5 active trials
AM
Abdul Naqash, MD
OKLAHOMA CITY, OK
Specialist
PI on 1 active trial1 Embryonal carcinoma publication
JP
Julian R. Molina, M.D., Ph.D.
Specialist
PI on 1 active trial
PJ
Paul J Jannetto
Specialist
PI on 1 active trial
CV
Carolina Meloni Vicente
INWOOD, NY
Specialist
2 Embryonal carcinoma publications
CP
Catarina Segreti Porto
Specialist
2 Embryonal carcinoma publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Embryonal carcinoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Embryonal carcinoma

Disease timeline:

New recruiting trial: SVV-001 With Nivolumab and Ipilimumab in Patients With Poorly Differentiated Neuroendocrine Carcinomas (NEC) or Well-Differentiated High-Grade Neuroendocrine Tumors (NET)

A new clinical trial is recruiting patients for Embryonal carcinoma

New recruiting trial: Phase 2 Trial of Voyager V1 in Combination With Cemiplimab in Cancer Patients

A new clinical trial is recruiting patients for Embryonal carcinoma

New recruiting trial: Tarlatamab vs Standard of Care Chemotherapy in Patients With Pre-treated Advanced, Pulmonary or Gastroenteropancreatic Poorly Differentiated Neuroendocrine Carcinomas (NECs)

A new clinical trial is recruiting patients for Embryonal carcinoma

New recruiting trial: Phase II Trial of Neoadjuvant and Adjuvant IO102-IO103 and Pembrolizumab KEYTRUDA® in Patients With Resectable Tumors

A new clinical trial is recruiting patients for Embryonal carcinoma

New recruiting trial: CTR-FAPI-guided Precision Surgery for Newly Diagnosed MTC

A new clinical trial is recruiting patients for Embryonal carcinoma

New recruiting trial: DLL3-Targeted PET/CT in Neuroendocrine Carcinoma

A new clinical trial is recruiting patients for Embryonal 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.

Common questions about Embryonal carcinoma

What is Embryonal carcinoma?

Embryonal carcinoma is a highly malignant germ cell tumor that represents one of the most undifferentiated and aggressive forms of nonseminomatous germ cell neoplasms. It most commonly arises in the gonads (particularly the testes in young men), but can also occur in extragonadal sites including the mediastinum, retroperitoneum, and, more rarely, the central nervous system and liver — as reflected by the associated ICD-10 codes C71.9 (brain) and C22.7 (liver). The tumor is composed of primitive, pluripotent cells that can differentiate into other germ cell tumor components, including teratoma,

How is Embryonal carcinoma inherited?

Embryonal carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Embryonal carcinoma?

25 specialists and care centers treating Embryonal carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.