Primary adult heart tumor

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ORPHA:874C38.0D15.1
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3Active trials6Specialists8Treatment centers

Where are you in your journey?

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

Primary adult heart tumors are rare growths that start directly in the heart tissue of adults. They are different from tumors that spread to the heart from other parts of the body (called secondary or metastatic tumors). Heart tumors can be either benign (not cancerous) or malignant (cancerous). The most common benign primary heart tumor in adults is called a cardiac myxoma, while the most common malignant primary heart tumor is called a cardiac sarcoma. These tumors can grow in any of the heart's chambers or walls and may affect how well the heart pumps blood. Symptoms depend on where the tumor is located and how large it has grown. Some people have no symptoms at all, while others experience shortness of breath, chest pain, irregular heartbeats, or fainting. Tumors can block blood flow inside the heart, cause blood clots to travel to the brain or other organs, or interfere with the heart's electrical system. Treatment usually involves surgery to remove the tumor when possible. For malignant tumors, surgery may be combined with chemotherapy or radiation therapy. Early detection is very important because some heart tumors can cause life-threatening complications if left untreated. The outlook varies widely depending on whether the tumor is benign or malignant and how early it is found.

Also known as:

Key symptoms:

Shortness of breath, especially during activity or when lying flatChest pain or pressureIrregular or rapid heartbeat (palpitations)Unexplained fainting or near-fainting spellsExtreme tiredness or fatigueSwelling in the legs or anklesFever, weight loss, or night sweats (more common with malignant tumors)Stroke-like symptoms such as sudden weakness, numbness, or difficulty speakingCoughing, sometimes with bloodDizziness or lightheadednessA heart murmur detected by a doctor

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

7 events
Mar 2026Impact of Exercise Intensity on Cardiac Health in Young Adult Survivors of Childhood Cancer: The PULSE Trial

Dana-Farber Cancer Institute — NA

TrialACTIVE NOT RECRUITING
Jan 2026In-Bedroom Renewed Air as Anti-inflammatory Adjuvant Therapy in Cancer Survivors

University College, London — NA

TrialRECRUITING
Feb 2025Cardiovascular Health in Adult Patients With Cancer Exposed to Cardiotoxic Therapies

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

TrialRECRUITING
Jan 2024The HIMALAYAS Trial and Lifestyle Changes in Pediatric, Adolescent and Young Adult Cancer Survivors Study: A Multicentre Randomized Controlled Trial

University Health Network, Toronto — NA

TrialRECRUITING
Dec 2022Clinical and Diagnostic Significance of Endothelial Dysfunction and Myocardial Contractility in Patients With AML

Samara State Medical University — NA

TrialRECRUITING
Jul 2019Aspirin in Reducing Events in the Elderly-Extension (ASPREE-XT)

Anne Murray

TrialACTIVE NOT RECRUITING
Jun 2018Study of Coronary Calcium Score as a Marker of Post-radiation Vascular Dysplasia in Adults Treated During Childhood for Cancer With Mediastinal Irradiation

Gustave Roussy, Cancer Campus, Grand Paris — NA

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Primary adult heart tumor.

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

View clinical trials →

Clinical Trials

3 recruitingView all trials with filters →
N/A1 trial
The HIMALAYAS Trial and Lifestyle Changes in Pediatric, Adolescent and Young Adult Cancer Survivors Study: A Multicentre Randomized Controlled Trial
N/A
Actively Recruiting
· Sites: Toronto, Ontario · Age: 1845 yrs
Other2 trials
Cardiovascular Health in Adult Patients With Cancer Exposed to Cardiotoxic Therapies
Actively Recruiting
PI: Antonella Lombardo (Fondazione Policlinico Universitario A. Gemelli, I) · Sites: Rome, Lazio · Age: 1899 yrs
Aspirin in Reducing Events in the Elderly-Extension (ASPREE-XT)
Active
PI: Anne Murray, MD, MSc (Berman Center for Outcomes and Clinical Research) · Sites: Birmingham, Alabama; Washington D.C., District of Columbia +34 more · Age: 6599 yrs

Specialists

6 foundView all specialists →
CD
Christina Dieli-Conwright
Specialist
PI on 2 active trials
AM
Anne Murray
Specialist
PI on 1 active trial
HN
Huong Q Nguyen
Specialist
PI on 1 active trial
AL
Antonella Lombardo
Specialist
PI on 1 active trial

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 Primary adult heart tumor.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Primary adult heart tumor

Disease timeline:

New recruiting trial: Acalabrutinib Monotherapy vs Investigator's Choice of Treatment in Patients With CL Leukaemia and Heart Failure

A new clinical trial is recruiting patients for Primary adult heart tumor

New recruiting trial: Cardiovascular Health in Adult Patients With Cancer Exposed to Cardiotoxic Therapies

A new clinical trial is recruiting patients for Primary adult heart tumor

New recruiting trial: In-Bedroom Renewed Air as Anti-inflammatory Adjuvant Therapy in Cancer Survivors

A new clinical trial is recruiting patients for Primary adult heart tumor

New recruiting trial: The HIMALAYAS Trial and Lifestyle Changes in Pediatric, Adolescent and Young Adult Cancer Survivors Study: A Multicentre Randomized Controlled Trial

A new clinical trial is recruiting patients for Primary adult heart tumor

New recruiting trial: Clinical and Diagnostic Significance of Endothelial Dysfunction and Myocardial Contractility in Patients With AML

A new clinical trial is recruiting patients for Primary adult heart tumor

New recruiting trial: Study of Coronary Calcium Score as a Marker of Post-radiation Vascular Dysplasia in Adults Treated During Childhood for Cancer With Mediastinal Irradiation

A new clinical trial is recruiting patients for Primary adult heart tumor

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.Is my tumor benign or malignant, and what does that mean for my treatment and outlook?,Should I be tested for Carney complex or other genetic conditions that might be related to my tumor?,What are my surgical options, and what are the risks of the operation?,Will I need chemotherapy or radiation in addition to surgery?,How often will I need follow-up imaging to check if the tumor comes back?,Are there any clinical trials I might be eligible for?,Should my family members be screened for heart tumors or related conditions?

Common questions about Primary adult heart tumor

What is Primary adult heart tumor?

Primary adult heart tumors are rare growths that start directly in the heart tissue of adults. They are different from tumors that spread to the heart from other parts of the body (called secondary or metastatic tumors). Heart tumors can be either benign (not cancerous) or malignant (cancerous). The most common benign primary heart tumor in adults is called a cardiac myxoma, while the most common malignant primary heart tumor is called a cardiac sarcoma. These tumors can grow in any of the heart's chambers or walls and may affect how well the heart pumps blood. Symptoms depend on where the tu

At what age does Primary adult heart tumor typically begin?

Typical onset of Primary adult heart tumor is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Primary adult heart tumor?

Yes — 3 recruiting clinical trials are currently listed for Primary adult heart tumor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Primary adult heart tumor?

6 specialists and care centers treating Primary adult heart tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.