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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.