We understand how scary and overwhelming a diagnosis of a brain tumor can be. Right now, you probably have a lot of questions. What is the very best treatment for my child? What do we do next?
We’ve tried to provide some answers to those questions in the following pages, and our expert pediatric subspecialists can explain your child’s condition fully when you meet with us.
About the brain
As you know, the brain is an important organ that controls a lot of what we do—voluntarily (like thinking) or involuntarily (like breathing). The brain controls thought, memory, emotion, touch, motor skills, vision, respiration, temperature, hunger and processes that regulate the body.
The brain can be divided into three main parts:
- the cerebrum
- the brainstem
- the cerebellum
The cerebrum is composed of the right and left hemispheres. Its functions include:
- initiation of movement
- coordination of movement
- temperature sensitivity
The brainstem includes the midbrain, the pons and the medulla. This area is responsible for:
- movement of the eyes and mouth
- relaying sensory messages (i.e., heat, pain, sound)
- cardiac function
- body temperature
- involuntary muscle movements
The cerebellum is located at the back of the head. Its functions are to:
- coordinate voluntary muscle movements
- maintain posture, balance and equilibrium
Other parts of the brain include the following:
The spinal cord contains bundles of nerve fibers that emanate from the brain and spread out to all parts of the body. These fibers allow signals from the brain to travel to and communicate with different parts of the body.
To protect all of these structures, the brain and spinal cord are encased in solid bones wrapped in a layer of tissue called meninges.
In addition, the brain floats in a liquid called cerebral spinal fluid, which acts as a shock absorber to protect the brain. This fluid is made in small spaces within the brain, called ventricles.
The brain is connected to the face by twelve specific cranial nerves that control most eye, face and tongue movements.
What causes brain tumors?
Although we do not know for certain why one child gets brain tumors while another does not, we know that a small number of brain tumors can be related to genetics.
Two things are true of all genetic conditions:
- Their root cause is located in the body, on the cellular level.
- They are (most likely) inherited, meaning that defective genes are passed on from parent to child.
Because of this, we can look at what “causes” brain tumors in two different ways—how they occur in the body on the cellular level, and how a child comes to inherit the gene.
(Remember: your child may have a brain tumor because he has inherited certain genes from his parents, or because his genes have mutated on their own.)
On the cellular level
In each cell are long molecules called chromosomes. These contain genes that determine such things as height, hair color and the shape of our face. They also contain “control signals” that tell a cell when to divide, when to stop dividing, or when to die. Sometimes, these control signals become damaged. This damage is thought to create a mutant gene.
A mutant gene could do (at least) two things wrong:
- it could actively tell a cell to keep dividing (like having your foot stuck on the gas pedal)
- it could lack the ability to tell the cell to stop dividing (like having no brakes)
If you have your foot stuck on the gas but your brakes still work, that's okay because the brakes will let you stop. Similarly, cells have safeguards so that in case something goes wrong, mutant genes are not created. For most pediatric brain tumors to develop, several safeguards must have failed, and must have created mutations in several genes.
Inheriting the gene
Again, these damaged genes can be created spontaneously or inherited. Everyone has two copies of each gene (one from each parent). In order for a tumor to grow, both copies of the gene must become damaged within the child’s body, or be already damaged and inherited—one from each parent.
Trying to find which genes have been mutated to allow a tumor to grow is like finding a needle in a haystack, but researchers all over the world are devoted to this task.
Why do brain tumors sometimes have more than one name?
Tumors have been classified (named) according to a number of different principles.
The old way: Tumors used to be classified according to how they looked under the microscope (and often their location in the brain).
The new way: As researchers have come to understand more about the cellular and molecular differences between groups of tumors, the names have changed.
This is important because it means that many tumors have more than one name. To make it even more confusing, different tumors can have the same name. Make sure you know both:
- the name that the pathologist (doctor who specializes in analyzing body tissues on a cellular level) gave to your child’s tumor
- which staging (or naming) system was used
How are brain tumors classified?
Children's, Dana-Farber Cancer Institute and Brigham and Women's Hospital use the World Health Organization (WHO) classification system for most pediatric brain tumors. This system incorporates:
- different aspects of the appearance of the cells, which indicate what type of brain cell the tumor arose from and how "aggressive" (likely to spread) the cells are likely to be
- the tumor's location within the brain
What is meant by the “grade” of the tumor?
Many pediatric brain tumors have a second important component to them after their name, which is the grade. This is an estimate of how aggressive or malignant a particular type of tumor is.
We can use glial tumors (which are also known as astrocytomas) as an example. Glial tumors come in four grades. Grade I is the lowest, meaning that these tumors tend to, on average, be less aggressive then their grade IV counterparts, which are usually highly malignant and very difficult to treat.
The grade is based on a number of factors, such as how many cells are dividing at any one time or how different the cells look from their normal counterparts.
What does it mean to say that a tumor is “benign” or “malignant”?
Tumors can also be classified as benign or malignant:
- Benign tumors usually remain localized, without the ability to spread. Complete removal of the tumor is usually all that is required for treatment.
- Malignant tumors can spread and invade other areas. This means that even if the tumor is surgically removed, other cells will grow back, continuing to invade your child’s body.
Remember that all tumors of the central nervous system are dangerous. Even benign tumors can be fatal if they press on certain vital areas, or if they cannot be completely removed and continue to grow.
Each child may experience symptoms differently, and symptoms vary depending on size and location of the tumor—both in the brain and elsewhere in the central nervous system.
There is no space in the skull for anything except for the brain and its fluid. This means that any tumor, extra tissue or fluid can cause pressure on the brain.
Symptoms related to pressure on the brain can include:
- vomiting (usually in the morning)
- personality changes
- decreased cardiac and respiratory function, and even eventually coma, if left untreated
Symptoms of brain tumors in the cerebellum may include:
- vomiting (usually occurs in the morning without nausea)
- uncoordinated muscle movements
- problems walking
Brain tumors in the lower part of the brain often press on the cerebellum. This may cause symptoms including:
- problems walking
- loss of control of the nerves and/or muscles of the face
Brain tumors in the brainstem may compress nerves and cause symptoms including:
- visual changes, such as double vision
- paralysis of nerves and/or muscles of the face, or half of the body
- respiratory changes
- clumsy, uncoordinated walk
Symptoms of brain tumors in the cerebrum may include:
- visual changes
- slurred speech
- paralysis or weakness on half of the body or face
- drowsiness and/or confusion
- personality changes and/or impaired judgment
- short-term memory loss
- ataxia (problems walking)
- communication problems
Symptoms of brain tumors in the optic pathway (eyes) may include:
- visual problems
- puberty or growth abnormalities
- excessive urination
Symptoms of tumors in the spine (usually spreading from a tumor at a higher point on the spinal cord) may include:
- bowel or bladder dysfunction
- back pain
- focal weakness or sensory loss, depending on where in the spine the disease is located
It’s important to remember that the symptoms of a brain tumor may resemble other, more common conditions or medical problems. Always consult your child's physician for a diagnosis.
Who’s at risk
- Children with certain genetic conditions (such as neurofibromatosis, von Hippel-Lindau disease, Li-Frameni syndrome, Gorlin’s syndrome and retinoblastoma) have an increased risk of developing tumors of the central nervous system.
- If your child has received radiation therapy to the head as part of previous treatment for other malignancies, he may also be at an increased risk for new brain tumors.
- Research has been looking into the relationship between past exposure to certain chemicals and having a child with a brain tumor. It is currently thought that some chemicals may change the structure of a gene that protects the body from diseases, including cancer.
Types of brain tumors
The different types of brain tumors include those listed below. For more information on each, including diagnosis and treatment, click on the type of tumor.
cerebellar pilocytic astrocytoma
choroid plexus tumors
diffuse pontine glioma
dysembryoplastic neuroepithelial tumor (DNT)
germ cell tumors of the brain
non-germinomatous germ cell tumor
optic pathway glioma
primitive neuroectodermal tumors (PNET)
atypical teratoid rhabdoid tumor (ATRT)
Q: Will my child be OK?
A: Today, more than half of all children diagnosed with a brain tumor will be cured of the disease. However, prognosis can vary widely based on the type of tumor, its location and whether it has spread. Your care team will talk to you in depth about your child’s unique situation.
Q: Where will my child be treated?
A: Children treated through Dana-Farber/Children’s Hospital Cancer Center will receive outpatient care at the Jimmy Fund Clinic on the third floor of the Dana Farber Cancer Institute. If your child needs to be admitted to the hospital, he will stay at Children’s Hospital Boston on the ninth floor of the Berthiaume Building.
Q: What services are available to help my child and my family cope?
A: Above all, we are committed to designing a treatment plan that fits the individual needs and circumstances of your child, and to providing emotional and educational support for your entire family. We offer a variety of services to help you, your child and your family get through this difficult time.
Q: What kind of supportive or palliative care is available at Children’s?
A: When necessary, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort for children with life-threatening illness. In addition, PACT can provide psychosocial support and help arrange end-of-life care, when necessary.
Q: My child gets a lot of headaches. Should I be worried?
A: Headaches are one of the biggest indicators of a brain tumor, yet most headaches are not a reason for alarm. You should worry about your child's headaches if they:
- Tend to occur in an established pattern specifically in the morning or at night
- Become progressively worse and more frequent
- Are accompanied by neurological symptoms
Again, only a tiny fraction of headaches are ever associated with brain tumors, so for the majority of headaches doctors typically will not do imaging tests of the brain. But if your child’s headaches are accompanied by neurological symptoms, it's important that a magnetic resonance imaging (MRI) or CT scan is done. Don't be afraid to ask your child’s physician about these tests if you are worried that a brain tumor might be a realistic possibility.
Q: Could anything have been done to prevent this?
A: No. No matter the outcome, parents can be assured there is nothing they could have done differently to prevent their child from having a brain tumor. There has never been any conclusive research linking environmental factors such as cell phones, telephone wires, alcohol or artificial sweeteners to incidences of brain cancer.
Questions to ask your child’s doctor
After your child is diagnosed with a brain tumor, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise—that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
If your child is old enough, you may want to suggest that he write down what he wants to ask his health care provider, too.
Some of the questions you may want to ask include:
- What type of brain tumor does my child have?
- Where in the brain is the tumor located? How might this affect my child?
- Has my child’s brain tumor spread?
- Can the tumor be treated with surgery?
- How long will my child need to be in the hospital?
- What are the possible short- and long-term complications of treatment? How will they be addressed?
- What is the likelihood of cure?
- What services are available to help my child and my family cope?
| Back to School program
| At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. Here, R.J. talks about what it was like returning to his class after a long absence.