| |
Brain Tumor FAQ
This list of frequently asked questions is a starting point for understanding brain tumors in both children and adults.
- What is a brain tumor?
A brain tumor is an abnormal mass of tissue in which some cells grow and multiply uncontrollably, apparently unregulated by the mechanisms that control normal cells. The growth of a tumor takes up space within the skull and interferes with normal brain activity. A tumor can cause damage by increasing pressure in the brain, by shifting the brain or pushing against the skull, and by invading and damaging nerves and healthy brain tissue. The location of a brain tumor influences the type of symptoms that occur. This is because different functions are controlled by different parts of the brain. Brain tumors rarely metastasize (spread) to other parts of the body outside of the central nervous system (CNS). The CNS includes the brain and spinal cord.
Some tumor types are more common in children than in adults. When childhood brain tumors occur in adults, they often occur in a different part of the brain than in children. Although most primary tumors attack member of both sexes with equal frequency, some, such as meningiomas, occur more frequently in women, whereas others, such as medulloblastomas, more commonly affect boys and young men.
The prognosis for brain tumor patients is as individual as the patients themselves. Your doctors will help you understand the possible repercussions of your specific tumor.
- What are the common symptoms of brain tumors?
The most common symptoms include headaches, which can be most severe in the morning; nausea or vomiting, which can be most severe in the morning; seizures or convulsions; difficulty thinking, speaking, or finding words; personality changes; weakness or paralysis in one part or one side of the body; loss of balance; vision changes; confusion and disorientation; and memory loss. Different parts of the brain control different functions, so symptoms will vary depending on the tumor’s location.
While these are the most common symptoms of a brain tumor, they can also indicate other medical problems. If you are having any of these symptoms, it is important to see your doctor and get a definitive diagnosis.
- What are the common symptoms of brain tumors in children?
Some of the general symptoms of brain tumors in children are headaches; vomiting (usually in the morning and without nausea); unsteadiness or loss of balance; seizures; double vision or vision problems; decreased coordination; fatigue or sleepiness; weakness on one side of the body; increased size of the head; uncontrolled eye movements; irritability; and behavioral changes.
Symptoms are often vague in children, especially in very young children who are not able to fully describe their symptoms. Some of these symptoms can occur with a variety of more common childhood illnesses. The difference with brain tumors is that these symptoms persist and get worse over time. If your child is experiencing any of these symptoms, it is important to see a doctor and get a definitive diagnosis.
Pediatric brain tumors are not contagious. Their causes are unknown.
- What is the difference between a primary brain tumor and a metastatic (secondary) brain tumor?
Primary brain tumors originate in the brain itself. Primary brain tumors do not spread from the brain to other parts of the body except in rare cases. Pathologists classify primary brain tumors into two groups: glial tumors (gliomas) and nonglial tumors. Gliomas are composed of glial cells, which include astrocytes, oligodendrocytes, ependymal cells, Schwann cells, microglia, and satellite cells. Nonglial tumors develop on or in structures within the brain, such as nerves, blood vessels, and glands.
Metastatic or secondary brain tumors begin as cancer in another part of the body. Some of the cancer cells may be carried to the brain by the blood or may spread from adjacent tissue. The site where the cancerous cells originated is referred to as the primary cancer. Metastatic brain tumors are often referred to as brain metastases or lesions. Metastatic brain tumors are the most common brain tumors. Because people are surviving primary cancers for longer periods of time, there has been an increase in metastatic lesions.
- Is a brain tumor cancer?
Some brain tumors are cancerous and some are not. Malignant tumors are considered cancer. Two of the most common forms of brain cancer are metastatic brain tumors (brain metastases) and glioblastoma multiforme (GBM).
Brain cancer cells mutate and lose their normal form or structure. This is called anaplasia. The degree of anaplasia helps to forecast a tumor's growth potential. The most rapidly growing tumors have the highest degree of anaplasia.
Benign tumors are not considered cancer. Some benign tumors have malignant forms, such as malignant meningiomas. Also, some benign brain tumors later develop into cancer. The reasons for this are unknown.
- What is the difference between a benign brain tumor and a malignant (cancerous) brain tumor?
Benign brain tumors are slow-growing tumors that can be removed or destroyed if in an accessible location. Malignant tumors (brain cancer) are rapidly growing tumors that invade or infiltrate and destroy normal brain tissue. No one is certain why, but some benign brain tumors may change over time to become malignant.
Tumors are graded to indicate how quickly they are growing. Most medical institutions use the World Health Organization (WHO) classification system to identify brain tumors. The WHO classifies brain tumors by cell origin and how the cells behave, from the least aggressive (benign) to the most aggressive (malignant).Some tumor types are assigned a grade, which signifies the rate of growth. There are variations in grading systems, depending on the tumor type. The classification and grade of an individual tumor help predict its likely behavior.
The distinction between benign and malignant can be ambiguous. Some benign tumors can be as dangerous as malignant ones if in a dangerous or inaccessible location, such as the brain stem. Conversely, some malignant tumors can be successfully treated.
Although they may fall into a particular classification or category, brain tumors are specific to each individual. Brain tumors have vastly different characteristics and patterns of growth due to the molecular makeup of the individual tumor.
- How are brain tumors identified?
A brain tumor diagnosis usually involves several steps, which can include a neurological examination, brain scan(s) and/or a biopsy.
- How is a brain tumor treated?
The standard treatments for brain tumors are surgery, radiation therapy, and/or chemotherapy. In general, radiation and chemotherapy treatments are used as secondary or adjuvant treatments for tumors that cannot be managed using only surgery. However, radiation and chemotherapy may be used without surgery if the tumor is inoperable.
In many cases, at the time of diagnosis, treatment decisions must be made quickly, especially with regard to surgery. When possible, the doctor and family will discuss a treatment plan based on the type and location of the tumor. In treating brain tumors, a multi-disciplinary treatment team, made up of various specialists, is generally considered the preferred approach. Neurosurgeons, neurologists, radiation oncologists, pathologists, and other medical professionals may be part of the treatment team.
- What will happen to a patient with a brain tumor?
To a large extent, what happens to you depends on the type of tumor you have, its location, the area of the brain involved, and the forms of therapy needed to treat it. But each patient is different, and these are not the only factors to be considered.
For patients and their families, the brain tumor experience is a journey into an unknown land filled with uncertainty. Through the diagnosis, treatments and follow-up visits, there’s much to learn and cope with physically, emotionally, and spiritually.
The more you and your family know and understand each aspect of your tumor and its treatment, the less uncertainty remains about what will happen. The confidence you place in yourself and your medical caretakers makes a tremendous difference. Perhaps most important of all is your outlook toward your condition and treatment and your willingness to believe in the power of healing. Brain tumor patients have a right to remain hopeful in the fight against their illness and its aftermath. Hope is a powerful coping strategy that empowers patients to look beyond the moment and into the future.
- How can I get connected with other brain tumor survivors and their family members?
The National Brain Tumor Society maintains a comprehensive list of brain tumor support groups for patients and their families, with over 200 support groups across the United States and Canada currently listed.
You can post and answer email messages on the NBTS Message Boards. NBTS Message Boards are for brain tumor patients, survivors, family members, caregivers, and health professionals dealing with the same tumor types. The brain tumor community can “meet” via the Internet and exchange ideas on treatments and research, as well as share suggestions and information about the medical and emotional challenges of living with a brain tumor.
NBTS offers the Patient Support Network for patients to connect with other survivors by email or by telephone. The Caregiver Support Network does the same for caregivers. You can also call the Patient Services Department at 800.934.2873 or email info@braintumor.org if you are interested in being connected to another survivor or caregiver. The NBTS support network volunteers offer information, stories, support, and an understanding ear.
In addition, the NBTS Caregiver Training Program offers one-day workshops for caregivers at treatment centers around the United States. For upcoming workshops, click here or call 800.934.2873.
- My child has a brain tumor. How might this affect his ability to return to school?
Frequent or prolonged absence from the classroom may disrupt the learning process. A child with a brain tumor may face the additional challenge of physical changes in the structure of the brain, which affect the thought and learning processes. It is important to identify these changes and to adopt teaching and learning strategies that capitalize on the child's strengths and compensate for the child's weaknesses. These changes can best be identified by neuropsychological testing.
Neuropsychological testing measures cognitive skills (memory, learning, language), motor skills, and social skills. It is used to help schools plan for optimal educational interventions. Child Development Centers associated with major medical centers generally have neuropsychologists who are skilled not only in administering testing but also in making recommendations for optimal functioning of the child. Many insurance companies require a letter of necessity from your child's doctor to cover this service. Once a child's educational needs have been identified, those involved in meeting these needs must decide upon a plan of action (called an Individualized Educational Plan or IEP) to ensure that these needs are met.
Prior to a full return to school, the social worker or school liaison on your child's treatment team can help your child to participate in school activities to the best of his or her current ability and energy. This can be done through partial attendance, hospital-based schooling, or "home-bound" tutoring. When your child is able to return to school more fully, there are several steps you can take to ease that transition.
How a child is feeling on any given day will also affect his or her academic performance. The attitude of the child's teacher and peers toward the child who is ill may also affect his or her behavior and performance in school.
Some children can continue to attend school while in treatment. Many are at risk of problems with their self-image and relationships with peers, especially if educators and classmates misunderstand the side effects of the child's illness and treatments. To make the transition back to school easier, the teacher and school nurse should be encouraged to prepare classmates by supplying them with information and answering their questions. Some medical centers provide a child life worker and health care practitioner who can help prepare the class for your child's return. Ask your child's healthcare team about how they can help.
- Where can I get more information about pediatric brain tumors?
You canemail us or visit NBTS Link Library for other pediatric resources or post a message on the NBTS Message Boards. In addition, you can call NBTS or contact the agencies below for more information and referrals.
Children’s Brain Tumor Foundation
866.228.HOPE (866.228.4683)
www.cbtf.org
Brain Tumor Foundation for Children, Inc.
404.252.4107
www.braintumorkids.org
Pediatric Brain Tumor Foundation of the United States
800.253.6530
www.pbtfus.org
For a free copy of A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors available in English and Spanish (Guia de recursos para padres de niños con tumors cerebrales o de médula espinal), contact the Childrens Brain Tumor Foundation at 866.228.HOPE (866.228.4683) or email info@cbtf.org.
Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends & Caregivers by Tania Shiminski-Maher, Patsy Cullen, and Maria Sansalone is another useful resource available in bookstores.
Thank you to National Brain Tumor Society for this information |
