The purpose of this section is to answer some of the most common general questions about childhood brain tumors, common PLGA questions and common doctor-related questions.
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The most common system for grading gliomas is called the WHO system because it is approved by the World Health Organization. In the WHO system, there are four grades of astrocytomas. Grade I are the slowest growing, least aggressive tumors and grade IV are the fastest growing, most aggressive tumors. In the WHO system, grade III is synonymous with anaplastic astrocytomas and grade IV is synonymous with glioblastoma multiforme. For a detailed description of this system for all types of gliomas and a chart showing how it compares to a couple of other systems for grading astrocytomas, go to http://neurosurgery.mgh.harvard.edu/newwhobt.htm.
There are also other systems used at individual institutions for grading tumors, so it is worth asking a doctor to explain what system he or she is using.
First, tumors can become more aggressive, making them a higher grade than they were initially. Prior radiation treatment is a factor that has been considered as a cause of malignant transformation.
Second, the grade is based entirely on the piece of a tumor removed for a biopsy. Tumors are often heterogeneous, so one part of a tumor may be one grade and another part of a tumor another grade. The pathologist will usually assign to a tumor the highest grade he or she sees, but there may be higher grade cells lurking elsewhere, especially if the biopsy sample is small.
At times, neuropathologists have differences of opinion on tumor type or grade. This can significantly alter the treatment planning for a child. Although there are rules for determining tumor type and grade, it is as much an art as a science. Therefore, it is important to have your biopsy samples looked at by a neuropathologist who sees a large number of brain tumors so that an accurate diagnosis can be made immediately.
Brain tumors are often divided between benign and malignant tumors based on grade. Low grade tumors are considered benign, while high grade tumors are considered malignant. Generally, the term malignant includes grade III and IV astrocytomas, including glioblastoma multiforme, and grade III oligodendroglioma. In this division, benign tumors are slower growing and less intertwined with normal brain tissue than malignant tumors. Benign tumors often can be removed more completely and respond better to treatment than malignant tumors.
In this short video, Dr. Turner shares with the audience concise definitions of benign versus malignant as these terms pertain specifically to the pediatric brain tumor patient.
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Typically, children diagnosed with a brain tumor will see the following specialists:
a) Pediatric Neurosurgeon: A doctor who specializes in surgery of the brain and nervous system in children.
b) Pediatric Oncologist: A doctor who specializes in the study and treatment of children’s cancer through the use of chemotherapy.
c) Radiation Oncologist: A doctor who specializes in the treatment of cancer through the use of radiation therapy.
d) Pediatric Neurologist: A doctor who specializes in the nonsurgical care of children with problems related to the brain or nervous system.
e) Pediatric Endocrinologist: A doctor who specializes in the treatment of children with problems relating to hormones, growth and development.
f) Pediatric Ophthalmologist: A doctor who specializes in the care of children with eye and vision disorders.
g) Pediatric Neuropsychologist: A person with a doctorate degree who works with children who may have difficulties in the areas of learning, memory, attention and behavior.
h) Care / Program Coordinator: A nurse with a master’s degree who coordinates the care of patients in the Pediatric Brain Tumor Program and manages other aspects of that program.
A pediatric oncologist is a generic term for any doctor who treats children who are cancer patients. There are many different kinds of oncologists. A medical oncologist is a doctor who specializes in treating cancer patients.
Medical oncologists should be board certified in medical oncology. Because brain tumors are a rare form of cancer, most medical oncologists do not see many brain tumor patients. If you have a medical oncologist, ask him or her about his or her experience with your particular diagnosis and make sure that he or she is willing to consult with brain tumor specialists. A medical oncologist should not be your only doctor, but if you have a good relationship with a medical oncologist or are required to see one by your insurance company, he or she can be a valuable resource to interpret current research for you and help you make decisions.
A pediatric neuro-oncologist is an oncologist who specifically sees pediatric brain tumor patients. Usually neuro-oncologists are trained both as oncologists and as neurologists. Although a neuro-oncologist should be up on current research, be sure that any neuro-oncologist you speak to is used to dealing with your type of tumor and people of your age.
Pediatric Neurologists are trained to treat many disorders of the nervous system. Many neurologists treat brain tumors regularly, so don’t worry if your doctor refers to himself or herself as a neurologist and not a neuro-oncologist. However, do ensure that your neurologist commonly sees brain tumor patients, not just headache or Parkinson’s patients.
Pediatric Neurosurgeons are doctors who do surgery on the nervous system.
Different neurosurgeons specialize in different parts of the nervous system from the spine to the brain. Although some pediatric neurosurgeons specialize in brain tumors, most pediatric neurosurgeons do spinal surgery, and the average neurosurgeon treats maybe one brain tumor a year. Before surgery ask your pediatric neurosurgeon how often he or she does surgery on the area where your tumor is. Some neurosurgeons who treat many brain tumors act as neuro-oncologists and will direct chemotherapy or other treatments, but most deal only with surgery and it’s follow up.
Pediatric Neuro-radiologists interpret MRI and CT scans and write a report explaining what the images mean and how they are changing. A radiation oncologist will plan and direct radiation therapy. A neuro-radiologist or radiation oncologist usually should not be your only doctor because they usually do not have specialized knowledge outside of their own specialist.
Different people’s treatment teams will have different make-ups with doctors with different titles. The important thing is not what the doctor calls him or herself. The important things are how experienced the doctors are with YOUR particular tumor type and how comfortable you feel with them.
Another list of questions is suggested by the American Cancer Society http://www.cancer.org.
You should get second, third, or even fourth opinions. You should synthesize the different opinions with the help of each doctor you interview. Even if your insurance limits your options, you can still get opinions. Many doctors will look at your MRI films without charge. There are many reasons to get multiple opinions. First, it confirms your diagnosis. Especially if your primary doctor does not see a lot of brain tumors, it is important to at least consult with, and ask your doctor to consult with, major brain tumor centers. Second, it helps you find a doctor you can trust. Third, it expands your treatment options. Fourth, it will give you peace of mind later to know you have left no stone unturned.
All of this is common sense, but no one has ever studied the effect of treatment center on brain tumor patients. There have been studies showing that hospitals that treat high volumes of patients or are highly specialized have better survival for some types of cancer.
Many people, unfortunately, either do not live near a major center or are limited by their insurance. Also, you may have a local doctor or oncologist whom you trust and want to lead your treatment team. It is then essential to find a brain tumor center to collaborate with your doctor. You can send them films and slides, and your doctor can consult with them over the phone. You should be able to get much of the benefit of a major center through collaboration.
Also, scientists and clinicians believe that pediatric tumors respond differently from adult ones. Therefore it is imperative that the center be dedicated to treatment of pediatric brain tumors in order to ensure the most accurate diagnosis and treatment options.