• Pediatric Brain Tumor Survivorship

    The Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic at Dana-Farber/Boston Children's Cancer and Blood Disorders Center helps patients manage the long-term effects of surviving a childhood brain or spinal cord tumor. It gives survivors and family members access to Dana-Farber's survivorship expertise, educational resources, and support groups. We offer a dedicated resource to address the unique needs of survivors of pediatric brain tumors.

    When you visit the Outcomes Clinic, you can meet with specialists to address the medical, cognitive, and physical challenges of surviving a pediatric brain or spinal cord tumor. These challenges may include mild to severe memory loss, learning disabilities, difficulty with social adjustment, behavioral and emotional problems, seizures, slow growth, hormonal abnormalities, weight gain, and fertility issues, as well as a risk of second cancers.

    You can be seen in the Outcomes Clinic if you were treated for a brain or spinal cord tumor at age 21 or younger and you have been off treatment for at least two years. You do not need to have been treated at Dana-Farber/Boston Children's in order to be seen in the clinic.

    Our services

    When you visit the Outcomes Clinic, our experts will work with you to learn about the challenges that you face, and find the resources and services that can help you overcome such challenges. At the end of your appointment, we'll give you a treatment plan, which is a summary of recommendations that can serve as a guide for living well and improving your quality of life. We offer:

    • Access to a team of pediatric brain tumor specialists, including neuro-oncologists, neurologists, endocrinologists, psychologists, social workers, physical therapists, educators, genetic counselors, and more
    • Education and support specifically designed for survivors of brain or spinal cord tumors
    • Personalized information geared to adolescent and young adult survivors, including employment information, college resources, fertility experts, and help with relationships
    • Support groups, opportunities to meet with other survivors and family members, and practical tools to help you transition to survivorship support

    Education and support

    When you and your family members visit the Outcomes Clinic, you'll have access to a wide range of educational resources and support groups specifically designed for survivors of brain or spinal cord tumors. You'll also have the opportunity to meet with other individuals who face similar challenges. We cluster appointments together, so that survivors with similar diagnoses can visit us on the same day and have a chance to meet one another. If you wish, you can join in a group discussion about the challenges often faced by survivors of brain or spinal cord tumors.

    Dana-Farber offers a program called STEPS (Success Through Education, Psychosocial Support, and Socialization) that holds regular dinners where brain tumor survivors and their family members can meet to discuss common challenges and strategies. We also host an annual symposium for patients and experts from Dana-Farber working to address common issues faced by brain-tumor survivors as they transition from school to adulthood.

    Research

    The Outcomes Clinic puts a strong emphasis on research, using knowledge about past brain tumor care to minimize the consequences of current and future treatments. Our researchers are helping develop more effective treatments, while at the same time finding ways to combat the long-term side effects of cancer treatment. This is part of our overall effort to provide the best possible quality of life for all cancer patients — past, present and future.

    You may be eligible to participate in specific research studies, depending on your diagnosis and treatment. You can ask about such opportunities when you visit our clinic.

    Contact us

    To learn more or to request an appointment at the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, please call the clinic facilitator at 1-855-320-2096 or email pedibraintumor@dfci.harvard.edu.
     

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