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About the Childhood Rare Tumors Program

  • When your child is diagnosed with a rare childhood cancer, it can feel overwhelming and isolating. At Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, our doctors are committed to providing exceptional care for children with rare and complex cancerous conditions.

    Our program offers the latest therapies and clinical trials and provides access to pediatric experts with extensive experience treating children and young adults. Because we are one of the largest pediatric cancer centers in the world, our specialists develop a deep expertise in each sub-type of pediatric cancer, including rare tumors, than is possible at most other cancer centers.

    We diagnose and treat many rare tumors including:

    How We Diagnose and Treat Childhood Rare Tumors

    We start every child’s treatment with the most accurate and specific diagnosis possible. Doctors use the full range of diagnostic tests available to detect and identify tumors. In addition to a physical examination and medical history, diagnostic tools may include imaging, blood tests, a biopsy, and a lumbar puncture (spinal tap).

    Your child’s medical team will review the results to determine the tumor’s size, location, and extent of the disease. They work together to develop a treatment plan that will deliver the best possible outcome.

    Every patient’s situation requires a unique treatment plan. Possible treatments may include:

    • Surgery: Doctors will often recommend surgery to treat many rare forms of cancer.
    • Chemotherapy: We may also use chemotherapy before or after surgery to eliminate any remaining cancer cells. In some situations, we’ll suggest high-dose chemotherapy with stem cell transplant.
    • Radiation therapy: Radiation therapy is another treatment option that we include in certain rare cancer treatment plans.
    • Chemoembolization
    • Cryotherapy/thermotherapy
    • Laser therapy
    • Shunts that drain fluid buildup from the brain

    We offer access to wide-ranging support services such as psychosocial support throughout your child’s treatment. After treatment is complete, your child will continue to receive expert care and support with comprehensive pediatric survivorship support services. Through these programs, we continue to monitor your child's health and well-being.

    Childhood Rare Tumors Research and Clinical Trials

    Children who are treated through our Rare Tumors Program benefit from the work of our basic and clinical researchers, who are striving to understand the scientific causes of rare cancers, which results in the introduction of new treatment options. We are a world leader in “translational” research, bringing laboratory advances to the bedside and into doctors’ offices as quickly as possible. In addition, we are the New England Phase 1 Center of the Children’s Oncology Group.

    At Dana-Farber/Boston Children’s, many children with rare tumors have the option to participate in clinical trials. Learn more about our clinical trials for pediatric cancer.

    Our Childhood Rare Tumors Program Specialists

    When we assemble your child’s treatment team, we are drawing from a team of highly qualified specialists that may include:

    • Pediatric oncologists
    • Surgeons
    • Radiation oncologists
    • Specialists in the fields of dermatology, endocrinology, hepatology, neurology, ophthalmology
    • Support staff, including psychiatrists and psychologists, child life specialists, social workers, nutritionists, and school specialists

    See our entire Childhood Solid Tumor Treatment Team.