Pulmonary blastoma

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ORPHA:64741C34.2C34.8C34.9
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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Pulmonary blastoma is a very rare type of lung cancer that looks like fetal (unborn baby) lung tissue under a microscope. It is sometimes called lung blastoma or pulmonary blastoma. There are two main forms: adult pulmonary blastoma (also called biphasic pulmonary blastoma), which contains both gland-like and connective tissue components, and pleuropulmonary blastoma, which mainly affects young children and is a different disease. Adult pulmonary blastoma most often affects people in their 30s to 50s and is more common in people who smoke. The tumor usually grows in one lung and can become quite large before causing symptoms. The disease affects the lungs and can make breathing difficult. As the tumor grows, it may press on nearby structures or spread to other parts of the body. Common symptoms include a persistent cough, coughing up blood, chest pain, and shortness of breath. Some people have no symptoms at all and the tumor is found by accident on a chest X-ray. Treatment usually involves surgery to remove the tumor when possible, often combined with chemotherapy and sometimes radiation therapy. Because this cancer is so rare, there are no standard chemotherapy regimens specifically approved for it, and doctors often use treatments designed for other types of lung cancer or sarcoma. Early detection and complete surgical removal give the best chance of a good outcome.

Also known as:

Key symptoms:

Persistent cough that does not go awayCoughing up bloodChest pain or tightnessShortness of breathUnexplained weight lossFatigue and low energyFever without a clear causeRecurrent lung infections or pneumoniaFeeling of a mass or pressure in the chestReduced ability to exercise or do physical activity

Clinical phenotype terms (9)— hover any for plain English
Pleuropulmonary blastomaHP:0100528
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 ↗

Treatments

1 available

XARELTO

RIVAROXABAN· Janssen Pharmaceuticals, Inc.■ Boxed Warning

for treatment of pulmonary embolism (PE)

No actively recruiting trials found for Pulmonary blastoma at this time.

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

Search ClinicalTrials.gov ↗Join the Pulmonary blastoma community →

Specialists

10 foundView all specialists →
KS
Kris Ann P Schultz
Specialist
PI on 1 active trial
JG
James I Geller
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 3 active trials
DM
Douglas R Stewart, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 5 active trials
IP
Isabelle Ruchonnet-Métrailler, MD PhD
Specialist
PI on 1 active trial
GM
Gianni Bisogno, MD
Specialist
PI on 2 active trials
AM
Alexis ARNAUD, MD
Specialist
PI on 2 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 Pulmonary blastoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Pulmonary blastoma

No recent news articles for Pulmonary blastoma.

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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 the cancer spread beyond the lung, and what does that mean for my treatment options?,Is surgery possible in my case, and what type of surgery would be recommended?,What chemotherapy or other drug treatments would you recommend, and what are the side effects?,Should my tumor be tested for specific genetic mutations, and could that change my treatment?,Are there any clinical trials I might be eligible for?,How often will I need follow-up scans, and what are we watching for?,Should I be referred to a center that specializes in rare lung tumors?

Common questions about Pulmonary blastoma

What is Pulmonary blastoma?

Pulmonary blastoma is a very rare type of lung cancer that looks like fetal (unborn baby) lung tissue under a microscope. It is sometimes called lung blastoma or pulmonary blastoma. There are two main forms: adult pulmonary blastoma (also called biphasic pulmonary blastoma), which contains both gland-like and connective tissue components, and pleuropulmonary blastoma, which mainly affects young children and is a different disease. Adult pulmonary blastoma most often affects people in their 30s to 50s and is more common in people who smoke. The tumor usually grows in one lung and can become qui

How is Pulmonary blastoma inherited?

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

At what age does Pulmonary blastoma typically begin?

Typical onset of Pulmonary blastoma is adult. Age of onset can vary across affected individuals.

Which specialists treat Pulmonary blastoma?

10 specialists and care centers treating Pulmonary blastoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.