Lymphoepithelial-like carcinoma

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:289682C80.9
Who is this for?
Show terms as
3Active trials37Specialists8Treatment centers

Where are you in your journey?

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

Overview

Lymphoepithelial-like carcinoma (also called lymphoepithelioma-like carcinoma or LELC) is a very rare type of cancer. It gets its name because the cancer cells look similar to a type of cancer found in the back of the nose and throat called nasopharyngeal carcinoma, but it occurs in other parts of the body instead. This cancer can appear in many different organs, including the lungs, stomach, salivary glands, thymus, urinary bladder, skin, liver, and other sites. The tumor is made up of cancer cells that are surrounded and mixed with large numbers of immune cells called lymphocytes, giving it a distinctive appearance under the microscope. Symptoms depend on where in the body the tumor develops. For example, if it occurs in the lung, a person might have a persistent cough, chest pain, or shortness of breath. If it develops in the stomach, symptoms might include abdominal pain, nausea, or weight loss. In some cases, the tumor is found incidentally during imaging done for another reason. This cancer has been strongly linked to Epstein-Barr virus (EBV) infection in many cases, though the association varies depending on the organ involved. Treatment typically involves surgery to remove the tumor when possible, often combined with chemotherapy and/or radiation therapy. Because the tumor contains many immune cells, it may respond better to treatment than some other cancers, and in certain locations the prognosis can be relatively favorable compared to other carcinoma types. However, outcomes vary widely depending on the site of origin, stage at diagnosis, and overall health of the patient.

Key symptoms:

Persistent cough (if in the lung)Chest pain or shortness of breathUnexplained weight lossAbdominal pain or discomfortNausea or vomitingBlood in urine (if in the bladder)Swelling or lump in the affected areaFatigue and general tirednessLoss of appetiteDifficulty swallowing (if in the throat or stomach area)Pain at the tumor siteNight sweatsSwollen lymph nodes near the tumor

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

3 events
May 2025Safety and Efficacy of Pucotenlimab in pLECC

Sun Yat-sen University — PHASE2

TrialRECRUITING
Feb 2025Testing the Addition of an Immunotherapy Drug, Cemiplimab (REGN2810), Plus Surgery to the Usual Surgery Alone for Treating Advanced Skin Cancer

National Cancer Institute (NCI) — PHASE3

TrialRECRUITING
Jan 2002The Chinese Pulmonary Lymphoepithelioma-like Carcinoma Collaboration Study

Sun Yat-sen University

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Lymphoepithelial-like carcinoma.

3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

3 recruitingView all trials with filters →
Phase 31 trial
Testing the Addition of an Immunotherapy Drug, Cemiplimab (REGN2810), Plus Surgery to the Usual Surgery Alone for Treating Advanced Skin Cancer
Phase 3
Actively Recruiting
PI: Neil D Gross (NRG Oncology) · Sites: Birmingham, Alabama; Gilbert, Arizona +193 more · Age: 1899 yrs
Phase 21 trial
Safety and Efficacy of Pucotenlimab in pLECC
Phase 2
Actively Recruiting
· Sites: Guangzhou, Guangdong · Age: 118 yrs
Other1 trial
The Chinese Pulmonary Lymphoepithelioma-like Carcinoma Collaboration Study
Actively Recruiting
· Sites: Foshan, Guangdong; Guangzhou, Guangdong · Age: 1899 yrs

Specialists

Showing 25 of 37View all specialists →
RK
Ritu Kulshrestha
Specialist
1 Lymphoepithelial-like carcinoma publication
YW
Yanhua Wu
GUANGZHOU, GUANGDONG
Specialist
1 Lymphoepithelial-like carcinoma publication
MO
Marcos Oliveira
Specialist
1 Lymphoepithelial-like carcinoma publication
GS
Gonçalo Samouco
Specialist
1 Lymphoepithelial-like carcinoma publication
LF
Luís Ferreira
Specialist
1 Lymphoepithelial-like carcinoma publication
SS
Sonam Spalgais
Specialist
1 Lymphoepithelial-like carcinoma publication
RK
Raj Kumar
Specialist
1 Lymphoepithelial-like carcinoma publication
MF
Michael M Feely
GAINESVILLE, FL
Specialist
1 Lymphoepithelial-like carcinoma publication
AP
Anshu Priya
TUPELO, MS
Specialist
1 Lymphoepithelial-like carcinoma publication
KH
Khizar Hayat
Specialist
1 Lymphoepithelial-like carcinoma publication
YH
Yufei Hu
Specialist
1 Lymphoepithelial-like carcinoma publication
PK
Pallavi Kopparthy
RALEIGH, NC
Specialist
1 Lymphoepithelial-like carcinoma publication
JC
Joanna Chaffin
GAINESVILLE, FL
Specialist
1 Lymphoepithelial-like carcinoma publication
HP
Hiral D Parekh
JACKSONVILLE, FL
Specialist
1 Lymphoepithelial-like carcinoma publication
MT
Mariana Tavares
Specialist
1 Lymphoepithelial-like carcinoma publication
AA
Andrea B Apolo
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 4 active trials
SM
Shivaani Kummar, MD
PORTLAND, OR
Specialist
PI on 5 active trials
ML
Monica Loghin
HOUSTON, TX
Specialist
PI on 1 active trial
AC
Alexander Colevas
PALO ALTO, CA
Specialist
PI on 2 active trials1 Lymphoepithelial-like carcinoma publication
SM
Scot C. Remick, MD
SCARBOROUGH, ME
Specialist
PI on 9 active trials

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 Lymphoepithelial-like carcinoma.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Lymphoepithelial-like carcinomaForum →

No community posts yet. Be the first to share your experience with Lymphoepithelial-like carcinoma.

Start the conversation →

Latest news about Lymphoepithelial-like carcinoma

Disease timeline:

New recruiting trial: The Chinese Pulmonary Lymphoepithelioma-like Carcinoma Collaboration Study

A new clinical trial is recruiting patients for Lymphoepithelial-like carcinoma

New recruiting trial: Safety and Efficacy of Pucotenlimab in pLECC

A new clinical trial is recruiting patients for Lymphoepithelial-like carcinoma

New recruiting trial: Testing the Addition of an Immunotherapy Drug, Cemiplimab (REGN2810), Plus Surgery to the Usual Surgery Alone for Treating Advanced Skin Cancer

A new clinical trial is recruiting patients for Lymphoepithelial-like 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.Where exactly is my tumor located, and has it spread to other areas?,Was Epstein-Barr virus found in my tumor, and does that affect my treatment plan?,What treatment options are available for my specific situation, and what are the expected benefits and side effects?,Is surgery an option for me, and if so, what would recovery look like?,Are there any clinical trials or newer treatments like immunotherapy that I might be eligible for?,How often will I need follow-up scans and appointments after treatment?,Can you recommend a pathologist or cancer center with experience in this rare type of cancer?

Common questions about Lymphoepithelial-like carcinoma

What is Lymphoepithelial-like carcinoma?

Lymphoepithelial-like carcinoma (also called lymphoepithelioma-like carcinoma or LELC) is a very rare type of cancer. It gets its name because the cancer cells look similar to a type of cancer found in the back of the nose and throat called nasopharyngeal carcinoma, but it occurs in other parts of the body instead. This cancer can appear in many different organs, including the lungs, stomach, salivary glands, thymus, urinary bladder, skin, liver, and other sites. The tumor is made up of cancer cells that are surrounded and mixed with large numbers of immune cells called lymphocytes, giving it

How is Lymphoepithelial-like carcinoma inherited?

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

At what age does Lymphoepithelial-like carcinoma typically begin?

Typical onset of Lymphoepithelial-like carcinoma is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Lymphoepithelial-like carcinoma?

Yes — 3 recruiting clinical trials are currently listed for Lymphoepithelial-like carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Lymphoepithelial-like carcinoma?

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