FAQs

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Where should I go for treatment for gliomatosis cerebri?

Gliomatosis cerebri is so rare that most doctors have never seen it – it’s important that you take your child to a major medical center where the neuroscience team has experience with rare brain tumors. At Cornell Dr.

Are there clinical trials for AT/RT my child could be joining?

Ask your child’s medical team what clinical trials may be appropriate. You can also check the current list of clinical trials on clinicaltrials.gov

Where should I take my child for treatment for AT/RT?

AT/RT is so rare that most doctors have never seen it – it’s important that you take your child to a major medical center where the pediatric team has experience with rare brain tumors. (See Doctors Who Treat AT/RT)

What can be done for a child diagnosed with AT/RT?

There are several treatments for a patient with AT/RT – although the prognosis remains poor, you do have some options. (See Diagnosing and Treating AT/RT)

How can we be sure my child's tumor really is AT/RT?

The diagnosis of AT/RT is based on genetic testing done on the biopsied material. The tissue from the biopsy is tested for the INI-1 mutation that defines AT/RT.
 
 

How did my child get this tumor (AT/RT)?

AT/RT is thought to be the result of a specific genetic mutation (INI1). This mutation is sometimes inherited and sometimes arises spontaneously (for no known reason). There is nothing you could have done to prevent it.
 

Are there brain tumor clinical trials my child could be joining?

Possibly. Ask your medical team what clinical trials may be appropriate — there are trials going on across the country with different eligibility requirements. 

Is my child going to die of this brain tumor?

The prognosis for a child with a brain tumor is very different based on what kind of tumor it is and where it’s located. Some types of brain tumors are very curable! For more information about diagnosing and treating specific pediatric brain tumors, see our index of different tumor types on the Children’s Brain Tumor Program page.

Where should I take my child for brain tumor treatment?

Brain tumors in children are very different than brain tumors in adults – it’s important that you take your child to a major medical center that has a neuroscience team with experience in pediatric brain tumors. (See Doctors Who Treat Pediatric Brain Tumors.)

If my child has a brain tumor, should I get a second opinion?

Of course – this is a serious medical issue and you should gather as much information and advice as you can. Our pediatric neurosurgeons are also available to provide a second opinion if your child has been diagnosed elsewhere. Use our online form to request an appointment or call 212-746-2363. You can also set up a secure online account to send in your images and request a second opinion.

How can you be sure my child has a brain tumor?

Advanced imaging techniques, including CT scans and MRI scans, can help a pediatric neurosurgeon diagnose a brain tumor. In some cases, the surgeon may recommend a surgical biopsy first to confirm a diagnosis, but that is not always necessary or possible. See Diagnosing and Treating a Pediatric Brain Tumor.

How did I get carotid occlusive disease?

Your arteries most likely became narrowed or blocked due to the buildup of atherosclerotic plaque in your blood vessels.  That plaque buildup often occurs as a result of high cholesterol, high blood pressure, heart disease, diabetes, smoking, or obesity. Carotid occlusive disease also has a family component, so having a family history of stroke increases your own risk of having carotid stenosis or carotid occlusion. Find out more about Carotid Occlusive Disease.

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