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.

Common Brain Tumor Questions

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1) What are the most common forms of children’s brain tumors?
According to experts, there are over 120 different types of pediatric brain tumors.  The most common forms of tumors, roughly 30% (40 different types) fall under the low grade glioma/astrocytoma umbrella.

Pediatric Brain Tumor Chart

2) What does tumor grade mean?
Grading is a way of telling how abnormal tumor cells look under the microscope. Generally, lower grades tend to look closer to normal cells, whereas, higher grade tumors look less like the specialized cells they came from. Higher grades tend to be more aggressive, that is, more infiltrative to normal tissue, faster growing and more likely to spread than lower grades.

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.

3) Can a tumor grade change?
Some patients have the grade of their tumor change during the course of the disease. This change can happen for two reasons.

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.

4) Is a brain tumor a type of cancer or not?
Technically, no. A tumor is considered cancerous if it will spread, or metastasize, beyond its original site to other parts of the body. Primary brain tumors rarely, if ever, spread outside the brain, so they are not technically cancer. However, high grade (grade III or IV) brain tumors are generally termed cancer. Low grade brain tumors are currently treated in a similar manner as the higher grade brain tumors because of their location in the brain. This is especially true when the low grade tumor cannot be totally removed or if it recurs. In these instances low grade tumors may be treated with chemotherapy and/or radiation, much like any other cancer.
5) Is a benign brain tumor safe?
NO. Any space occupying lesion in the brain (whether blood, tumor, abscess or something else) is dangerous because there is limited space inside the skull. Therefore, the word benign is meaningless and misleading when applied to brain tumors.

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.

6) If my child's brain tumor might be treated the same way that a high grade brain tumor is, can I ask for help from other cancer organizations?
The short answer is possibly. At this time the inclusion of benign brain tumors in the cancer community is variable. There are organizations who have welcomed our children/families with open arms. The best advice is to ask. Don’t assume that your child will not qualify for a wish or a camp or other help based on the benign diagnosis. If the answer is no, try to take comfort that A Kids’ Brain Tumor Cure Foundation is working to bring awareness that brain tumors, whether slow or fast growing, while different from tumors in other parts of the body can be equally if not more detrimental to the patient.
7) Can Cognitive Damage in Pediatric Brain Tumor Patients be Reversed?
Still an unknown, scientific studies into this area have historically been sparse.  Collateral damage to cognitive processes for a pediatric brain tumor patient are common due to the toxicity and invasive nature of current treatments.  In this short video, Dr. Packer shares with the audience some new insights into scientific studies targeted at reversing cognitive damage to pediatric brain tumor patients.
8) If I wish to connect with others, who have brain tumors, is it more important to find those with a similar specific pathologic diagnosis or is the location more important?
In understanding brain tumors, location tends to be the most important factor. Generally all low grade gliomas in a particular area have the same treatment options available as well as having similar symptoms/late effects. Just to highlight the difference, a cerebellar JPA is radically different than an optic pathway glioma JPA. The former may be totally cured by a complete resection. On the other hand, optic pathway gliomas are deep and can never be totally removed. These tumors often are not even biopsied but presumed to be low grade gliomas.

Common PLGA Brain Tumor Questions

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1) What is a PLGA?
PLGAs are grade 1 and grade 2 astrocytomas. Depending on the pathologic appearance these can be further categorized and labeled. Low grade astrocytomas can also be categorized according to their location in the brain. The location terms are frequently used first by radiologists and neurosurgeons, as tissue is not available before resection. However, often there are characteristics radiographically that lead the doctor to suspect the tumor is low grade.
2) What is the incidence of pediatric low grade astrocytomas (PLGAs)?
Data on non-malignant (formerly called benign) brain tumors was not gathered in the US until 2002, through a Congressional mandate. The Central Brain Tumor Registry of the United States estimates that in 2005 alone, over 1000 children (defined in the age group of 0 -19) were diagnosed with PLGA. (See PLGA Statistical Data)
3) How does the incidence of PLGA compare to the incidence of other brain tumor types?
PLGA is unequivocally THE most common form of childhood brain tumor as per the The Central Brain Tumor Registry of the United States. (See Histologies Chart). PLGAs represent 10% of cerebral and 85% of cerebellar astrocytomas.

Pediatric Brain Tumor Chart

4) What is a glioma?
Simply, a glioma is a tumor of the glial cells. This is a broad category, which may give you a general gestalt, but doesn’t tell you much of the story. This is similar to house being a broad category of residence. There can be row homes and colonials and cabins in the woods. Gliomas are the most common type of primary brain tumor, but not every brain tumor is a glioma. Because there are different types of gliomas and because factors such as patient age or tumor location can affect tumor behavior, two people with gliomas may have very different experiences.
5) What is a glial cell?
Glial cells are the cells that support the neurons of the brain. There are two type of glial cells — the astrocyte and the oligodendrocyte. The astrocyte is the one that provides the framework with the neurons are laid out on and are the ones that nourish these cells. The oligodendrocytes are the cells that wrap around the neuron’s axon to make the myelin. A tumor of an astrocyte is an astrocytoma and a tumor of an oligodendrocyte is an oligodendroglioma. There can be mixed tumors of astrocyte and oligodendrocyte lineage. In addition there can be mixed tumors of neuronal and glial components. These mixed tumors are called ganglioglioma and are still classified as a glial tumor.

Common Questions to Ask Doctors

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1) What kind and how many health care professionals will my child need?
Children who have been diagnosed with a brain tumor often will see multiple health care providers in many different specialties over the course of their diagnosis, treatment, and follow-up care. The type of tumor and its location will determine what kinds of specialists will become involved in each child’s care. Your child may be involved with only one specialty area at a time, or may be seen by multiple specialties at the same time.

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.

2) What kinds of doctors treat pediatric brain tumors?
There are many different types of doctors who treat pediatric brain tumors.

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.

3) What questions should I ask my doctor?
The American Brain Tumor Association has good lists of questions to ask a doctor at different stages of treatment on the ABTA website http://www.abta.org.

Another list of questions is suggested by the American Cancer Society http://www.cancer.org.

4) Should I get another opinion?
YES! If your home needed a major repair wouldn’t you get another opinion before going forward with the original idea? Your health or that of your children, is no different.

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.

5) Why do I need to be treated by a major PEDIATRIC center?
Treating a brain tumor is difficult. Reading MRI films and pathology slides is as much an art as a science. This is your life at stake. Even a good doctor is not enough; you need to have a doctor who sees a lot of brain tumors including the particular type you have. Your doctor needs to be up on current research and trials. Your doctor needs to be able to make subtle interpretations of your symptoms. Moreover, a major center will be more able to connect you with resources to help you with non-treatment related aspects of the disease.

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.