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Childhood Carney Triad

  • Carney triad is characterized by multiple tumors, including gastrointestinal stromal tumors (GIST), pulmonary chondromas, and paragangliomas. These masses grow primarily in the stomach, lungs, or neuroendocrine tissues of the head, neck, and torso.

    • Carney triad is extremely rare.
    • When it occurs, it is most common in young females.

    At Dana-Farber/Boston Children's Cancer and Blood Disorders Center, we treat children with Carney triad in our Endocrine-Oncology Program. Our innovative approach to treating endocrine tumors such as Carney triad goes beyond medical care. We also provide children and their families with the physical, social, and emotional support they need throughout treatment and survivorship.

    Causes and Symptoms of Childhood Carney Triad

    Carney triad is likely related to genetic factors, but the exact cause is unknown. Symptoms may vary in children, mostly dependent on the tumors' location and type.

    Symptoms may include:

    • Gastrointestinal bleeding
    • Stomach pain
    • Abdominal mass that your doctor can feel on examination
    • Anemia (low red blood cell count)
    • Headaches
    • High blood pressure

    Many of these symptoms can indicate other conditions. If your child experiences any of the above symptoms, have them evaluated by your doctor as soon as possible.

    How We Diagnose Childhood Carney Triad

    We diagnose Carney triad with multiple diagnostic evaluations. The tests help us identify the size, location, and type of tumors and confirm the diagnosis. These tests may include imaging studies, endoscopy, biopsy, and blood and urine tests. We may also perform molecular testing to determine whether the tumor is linked to specific genes.

    If your child needs any additional testing, your doctor will discuss their recommendations with you. Once we have an accurate and complete diagnosis, we will develop a treatment plan that meets your child's individual needs.

    How We Treat Childhood Carney Triad

    We provide the latest treatments, including advanced surgical procedures, to remove the tumors. Our doctors will work closely with you and your family before, during, and after treatment.

    Some common treatments for Carney triad are:

    • Surgery: Surgery may involve a biopsy and removal of entire tumors and nearby tissues.

    • Radiation therapy: This treatment uses high-energy rays from a specialized machine to damage or eliminate cancer cells and shrink tumors. We typically use radiation therapy before or after surgery.

    • Chemotherapy: We may also use chemotherapy, a drug treatment that aims to destroy or shrink cancer cells.

      Different groups of chemotherapy drugs work in different ways. Often, we will use a combination of chemotherapy drugs. Your child may receive chemotherapy:

      • Orally, as a pill to swallow.
      • Intramuscularly, as an injection into the muscle or fat tissue.
      • Intravenously, as a direct injection into the bloodstream or IV.
      • Intrathecally, as a direct injection into the spinal column through a needle.

      While chemotherapy can help treat certain cancers, the treatment can't differentiate normal healthy cells from cancer cells. As a result, there may be adverse side effects during treatment. Being able to anticipate these side effects can help the care team, child, and family prepare for, and in some cases prevent these complications from occurring.

    After treatment, we provide children with comprehensive care in our pediatric cancer survivorship programs. Besides regular medical evaluations, we provide patient and family education, support groups, and a wide variety of counseling services.

    Research and Clinical Trials for Childhood Carney Triad

    At Dana-Farber/Boston Children's, our mission is to bring laboratory advances to the bedside and into doctors' offices as quickly as possible. We conduct many groundbreaking clinical trials to help find new promising approaches to treat pediatric cancer.

    In addition to launching our own clinical trials, we also offer trials available through collaborative groups such as the Children's Oncology Group (COG). If your child has a progressive or recurrent tumor, he or she may be eligible for experimental therapies available through these groups or from one of our independent clinical investigators.

    Long-term Outcomes for Children with Carney Triad

    Your child's outlook will depend on where the tumors' locations and whether they have spread. Once your doctor has confirmed a diagnosis, they will be able to discuss long-term outcomes with you in-depth.

    Childhood Carney Triad Treatment Team

    At Dana-Farber/Boston Children's, your child's care team includes some of the best pediatric cancer doctors worldwide. See a complete list of the specialists in our Childhood Solid Tumor Center.