Living with Pleuropulmonary blastoma
A cancerous tumor of the lungs or the lining around them that is seen in children, sometimes with other growths in the family.
Understanding Pleuropulmonary blastoma
It is seen in children and can begin in infancy. About 25% of patients also have other lesions or tumors, such as lung or kidney cysts and ovarian or testicular tumors. These may also affect family members.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the DICER1 gene have been found in families with this tumor. It follows an autosomal dominant pattern, meaning one changed copy of the gene can be passed from parent to child.
Also known as: childhood pulmonary blastoma; paediatric pulmonary blastoma; pediatric pulmonary blastoma; pleuro-pulmonary blastoma; pleuropulmonary blastoma (morphologic abnormality); ppb
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Pleuropulmonary blastoma.
Explore research for Pleuropulmonary blastoma
Explore actively recruiting Pleuropulmonary blastoma studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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