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An atypical teratoid rhabdoid tumor, often called AT/RT, is a very rare and fast-growing tumor of the central nervous system. Learn about AT/RT and find information on how we support and care for children with this rare cancer before, during, and after treatment.
The Brain Tumor Center at Dana-Farber/Boston Children's Cancer and Blood Disorders Center cares for children with many different types of common and rare brain and spinal tumors, including astrocytomas, medulloblastomas, ependymoma, glioblastomas, and primitive neuroectodermal tumors (PNET).
Your child will receive care from some of the world’s most experienced pediatric brain tumor doctors and internationally recognized pediatric subspecialists.
Our team works closely together to develop a care plan that offers your child the highest possible quality of life after treatment, and takes the needs of your child and your family into account.
Children treated at the Brain Tumor Center have access to some of the most advanced diagnostics and therapies, including:
Thanks to refined surgical techniques and improved chemotherapy and radiation therapy, the majority of children with brain and spinal cord tumors are now long-term survivors. However, they may face physical, social, and intellectual challenges that require specialized care.
Learn more about our Brain Tumor Center.
Patients who have atypical teratoid rhabdoid tumors are treated through the Brain Tumor Center at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, New England's largest and most active pediatric brain tumor treatment center. Our team provides advanced treatment options for young patients with AT/RT and other brain tumors.
An atypical teratoid rhabdoid tumor, often called AT/RT, is a very rare and fast-growing tumor of the central nervous system. If your child has been diagnosed with AT/RT, there are a number of things that you should know:
As a parent, you undoubtedly want to know what may have caused your child's tumor. More than 90 percent of cases of AT/RT are associated with a genetic defect. However, the cause of this abnormality is not known.
It's important to understand that these and other brain tumors most often occur with no known cause. There's nothing that you could have done or avoided doing that would have prevented the tumor from developing.
AT/RT grows very rapidly and, as a result, symptoms can develop quickly over days or weeks. Common symptoms of AT/RT include:
Your child's symptoms may vary based on his age and the location of the tumor.
The symptoms of a brain tumor may resemble other, more common conditions or medical problems. Always consult your child's physician for a diagnosis.
For many tumors, we use a system of classification called "staging," that physicians use to evaluate cancers. However, there is currently no standardized classification system for AT/RT. The tumor may be:
In addition, these tumors are classified as:
Using a variety of diagnostic tests, your child's physician will gather as much information as possible about your child's tumor and will discuss treatment options with you and your family.
We may perform a number of tests to determine the type of tumor your child has and whether it has spread. These may include:
If your child has been diagnosed with AT/RT, you'll naturally want to know how your child's physician may treat the tumor. Specific treatment to cure AT/RT will depend on:
There are a number of treatments that your child's physician may recommend. Some of them help to treat the tumor while others are intended to complications of the disease or side effects of the treatment. If your child is diagnosed with AT/RT, treatment may include:
Surgery may be performed by one of our experienced pediatric neurosurgeons to confirm the diagnosis of AT/RT (biopsy) or to remove as much of the tumor as possible (resection).
In addition to surgery, your child may receive precisely targeted and dosed radiation therapy in order to kill cancer cells left behind after surgery. This treatment is important to control the local growth of tumor. If the AT/RT has spread, we may recommend radiation to the whole brain and spinal cord, depending on your child's age and the tumor location.
Chemotherapy is the use of drugs that interfere with the cancer cell's ability to grow or reproduce. Your child's physician may recommend chemotherapy before surgery in order to help shrink the tumor and make complete removal more likely.
While chemotherapy can be quite effective in treating certain cancers, the agents don't differentiate healthy cells from cancer cells. Because of this, there can be side effects during treatment. Being able to anticipate these side effects can help the care team, parents, and child prepare, and, in some cases, prevent these symptoms from occurring.
Chemotherapy is systemic treatment, meaning it is introduced into your child's bloodstream and travels throughout the body to kill cancer cells. Your child may be given chemotherapy:
In the case of AT/RT and other brain tumors, intrathecal chemotherapy is often an important part of treatment as it allows these medications to be delivered directly to the central nervous system to treat the tumor.
Inside many of the body's bones is a special tissue called bone marrow that produces a number of important blood cells. Stem cell transplant (also called bone marrow transplant) is a therapy for children with cancer or other diseases that affect the bone marrow. In some cases, your child's physician may recommend stem cell transplant as a treatment for AT/RT.
AT/RT is a very difficult tumor to cure and, unfortunately, the outcomes remain poor. In general, older children with AT/RT tend to do better than young children. Cure rates for children over 3 are about 70 percent, while cure rates for children younger than 3 remain below 15 percent.
Survivors of pediatric brain tumors may face physical, psychological, social and intellectual challenges related to their treatment and will require ongoing assessment and specialized care.
To address the needs of these patients, Dana-Farber/Boston Children's established the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic.
Today, more than 900 pediatric brain tumor survivors of all ages are followed by the Outcomes Clinic, a multi-disciplinary program designed to address long-term health and social issues for families and survivors of childhood brain tumors. Some of the post-treatment services provided by the Outcomes Clinic include:
As a result of treatment, children may experience changes in intellectual and motor function. Among several programs addressing these needs are the School Liaison Program and Back to School Program, which provide individualized services to ease children's return to school and maximize their ability to learn.
In addition to providing thorough and compassionate care, our Pediatric Neuro-Oncology Outcomes Clinic specialists conduct innovative survivorship research and provide continuing education for staff, patients and families.
Because AT/RT is so rare, these tumors are difficult to study. As a result, Dana-Farber Cancer Institute and Boston Children's Hospital collaborates with other institutions in the Boston-area and around the country to improve our current understanding of this condition and offer new treatments to children with AT/RT.
Currently, researchers at Dana-Farber/Boston Children's are working with the Children's Hospital of Philadelphia and the Broad Institute of MIT and Harvard to learn more about the molecular characteristics of acute teratoid rhabdoid tumors.
In addition, researchers in the Brain Tumor Center are collaborating with physicians and researchers that treat other types of rhabdoid tumors in order to study the effectiveness of current treatments and to establish new, more standardized treatments for all types of rhabdoid tumors.
Children's doctors and scientists have made many breakthrough discoveries about diseases like polio and leukemia; our ongoing innovative research continues to push the boundaries of the way pediatric medicine is practiced.
It's possible that your child will be eligible to participate in one of Dana-Farber/Boston Children's current clinical trials. Most children with a diagnosis of AT/RT will be treated as part of a clinical trial. These studies are useful for a multitude of reasons: Some trials are designed to evaluate the effectiveness of a particular drug, treatment or therapy on a specific disease; others help doctors to better understand how and why certain conditions occur.
If your child's physician recommends participation in a clinical trials, that likely means that your child's physician believes that the plan outlined in that trial represents the absolute best, latest care your child can possibly receive.
And participation in any clinical trial is completely voluntary: We will take care to fully explain all elements of the treatment plan prior to the start of the trial, and you may remove your child from the medical study at any time.
The Pediatric Brain Tumor Program at Dana-Farber/Boston Children's participates in several multi-center national clinical trials.
Many children with cancer receive treatment in the outpatient setting, which allows them to stay in school and continue to develop intellectually and socially. However, returning to school can be an emotional experience; our Back to School Program is designed to ease your child's transition back to the classroom.
Concierge Services is your one-stop place to learn about Dana-Farber programs, services and resources, as well as information on getting around Boston, finding lodging or restaurants, and activities in the area.
Dana-Farber and Children's Hospital, including parking facilities, are fully accessible to people with disabilities. There are wheelchairs at the main entrance, and security staff can provide personal assistance. We also have many educational materials available in large print and audiotape formats.
The Ethics Consultation Service is available for patients and families who may be facing difficult decisions and choices regarding care. Our goal is to bring together patients, families and health care providers to talk about ethical concerns and help everyone involved arrive at a resolution that is right for all.
Find practical tips and suggestions for individuals caring for a family member or friend with cancer, including creating a caregiving plan, finding community resources, and looking after your own well-being.
Friends' Place provides personal consultations to help cancer patients of all ages cope with changes in physical appearance that result from cancer treatment. Our experienced, compassionate team provides fittings for compression garments or breast prostheses, helps with wigs and other head coverings, and offers make-up and skincare advice.
The Friends' Corner Gift Shop, located on the first floor of the Yawkey Center for Cancer Care, offers a wide selection of unique gifts and everyday items for patients, families and staff.
Every year, thousands of patients with cancer from around the world come to Dana-Farber for their care. We provide a wide array of logistical and other services for individuals who live outside the United States.
Dana-Farber provides interpreting services for patients whose first language is not English. Interpreters may be requested for any activity, including registration, booking appointments, attending treatments and exams, support groups, and meetings with doctors and other members of your health care team.
Just for Teens provides programs and activities for teens and young adults with cancer at the Jimmy Fund Clinic and Children's Hospital Boston. We offer activities and events both inside and out of the hospital so that you have creative ways to pass the time and can meet other teens who are going through similar experiences.
Our nutritionists are registered dietitians who can assist you in planning an optimal diet during any stage of your cancer journey, cope with any side effects you may experience, and answer your questions about the latest findings on cancer and nutrition.
The Eleanor and Maxwell Blum Patient and Family Resource Center and its satellite resource rooms are staffed by health care professionals and provide computer stations, books, brochures, videos, and CDs to help you find information and support on a variety of issues about cancer treatment and care.
Patients websites help friends and family members stay up-to-date on their loved ones' condition and write messages of support and encouragement.
The Dana-Farber pharmacy fills prescriptions for all pediatric and adult patients. Our pharmacists are an extension of the patient care team and work closely with your physicians to provide seamless, convenient, safe care.
More than 1,200 Dana-Farber patients and their families have enjoyed free trips to baseball games, theater shows, museums, and other attractions this year through the Recreational Resources program.
The School Liaison Program is for pediatric patients who are diagnosed with or have completed a treatment that involves the central nervous system. We provide consultation about the cognitive late effects of treatment to help parents understand and advocate for their child's learning needs.
Through all stages of cancer treatment and survivorship, our Spiritual Care staff is available 24 hours a day to provide emotional and spiritual support for adults and pediatric patients and family members.
Integrative therapies, also known as complementary therapies, range from acupuncture and massage to nutritional guidance and music therapy. Patients treated at the Zakim Center credit its services with easing nausea, improving circulation, and reducing pain, stress, and anxiety associated with cancer treatment.
Dr. Mark Kieran, Director of the Pediatric Brain Tumor Program, cares for children and teens with brain tumors. Dr. Kieran explains how explains how a multidisciplinary team of specialists come together to deliver specialized care for each child.
Learn more about how Dana-Farber/Children’s Hospital Cancer Center’s Pediatric Brain Tumor Program clinicians uniquely treat children and teens with brain and spinal cord tumors.
Browse clinical trials