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Brain Tumor FAQ

This list of frequently asked questions is a starting point for understanding brain tumors in both children and adults. More detailed information can be found in other sections of this website.

  1. What is a brain tumor?
  2. What are the common symptoms of brain tumors?
  3. What are the common symptoms of brain tumors in children?
  4. What is the difference between a primary brain tumor and a metastatic (secondary) brain tumor?
  5. Is a brain tumor cancer?
  6. What is the difference between a benign brain tumor and a malignant (cancerous) brain tumor?
  7. What does it mean when a brain tumor is in remission?
  8. What are recurrent tumors?
  9. How are brain tumors identified?
  10. How is a brain tumor treated?
  11. What will happen to a patient with a brain tumor?
  12. How do I choose the best doctor and medical center?
  13. How can my family, my loved ones, and I cope with my brain tumor?
  14. How can I get connected with other brain tumor survivors and their family members?
  15. My child has a brain tumor. How might this affect his ability to return to school?
  16. Where can I get more information about pediatric brain tumors?
  1. 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.

    For more information about brain tumor types, click here.


  2. 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.

    Please visit Symptoms and Diagnosis to learn more about common symptoms of brain tumors.


  3. 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.


  4. 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.

    For more information about brain metastases, see Understanding Brain Metastases: A Guide for Patient and Caregiver.


  5. 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.


  6. 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.


  7. What does it mean when a brain tumor is in remission?

    When a tumor is in remission or is stable, it means the tumor cells have entered a phase in which they generally have stopped growing or multiplying. This may or may not mean that these tumor cells will never grow again. In some cases, the tumor has actually been destroyed and the area it occupied in the brain is composed only of dead tissue, called necrosis. In other circumstances, tumor cells remain alive or viable, and retain the capacity to grow actively again, meaning that the tumor may recur at a later date.


  8. What are recurrent tumors?

    Recurrent tumors grow back after being removed or stabilized. Recurrence commonly occurs in the same area as the original tumor, but may develop in another part of the brain or spinal cord. Both benign and malignant brain tumors can recur after initial treatment. A brain tumor that has been treated with radiation or chemotherapy may disappear or remain in remission, a state in which the tumor cells stop multiplying. Remission can be temporary or permanent. It is not possible to predict whether or not recurrence will take place. Therefore, after receiving therapy the patient will need to have follow-up appointments indefinitely, usually with MRI imaging, even if the tumor was benign.


  9. 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.

    Please visit Symptoms and Diagnosis to learn more about how a brain tumor is diagnosed.


  10. 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.

    For more on how brain tumors are treated, please visit Treatment Information.


  11. 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.


  12. How do I choose the best doctor and medical center?

    There is no one “best” doctor, but there are issues to consider that can help guide you in choosing the doctor that is best for you. Good communication is key to a good relationship with your doctors. If you ask your questions and get them answered, the experience will be easier for you and your family. If you are not comfortable with your doctor, consider changing doctors.

    Getting a second opinion is important if your doctor does not have experience with brain tumors or if you want to confirm your primary physician’s recommendation. Ask your doctor for a referral to a specialist. You can also consult the information in our Treatment Center Database to research different treatment centers, or call the National Brain Tumor Society. Click here for the fact sheet How and Why to Get a Second Opinion.

    There are many important questions to ask when choosing a treatment center. Does the center have specialists in neurosurgery, neurology, neuro-oncology, and radiation oncology? What types of imaging technology are available? How many patients does the medical center diagnose and treat per year? Our fact sheet, Issues to Consider When Choosing a Treatment Center, may be helpful in this process.


  13. How can my family, my loved ones, and I cope with my brain tumor?

    A family in which someone has a brain tumor is constantly challenged by changing circumstances, and yet must also strive to be caring and supportive throughout the entire process of diagnosis, treatment, and recovery.

    Being aware of some of the different ways in which illness may affect you and your loved ones can help in finding the best ways to cope with these changes. People may respond in various ways. Common reactions can include physical symptoms such as fatigue, nervousness, impaired sleep or appetite; emotional reactions such as fear, shock, depression, anger, guilt, mood swings, or crying; cognitive symptoms that may include difficulty concentrating or forgetfulness; and spiritual responses such as searching for meaning, or an increase or decrease in spirituality. These are all normal responses to stress. Recognizing these common issues can guide everyone struggling with the challenges brought about by a brain tumor diagnosis.

    Brain tumor patients will often have a primary caregiver, the main person who assists the patient and cares for his or her needs. Communication between family members about changes in roles and responsibilities may become more difficult. How a family copes with these changes is affected by the ability to communicate. Families may need to identify outside sources of support to assist with this process, such as a counselor, psychologist or mental health professional.

    Identifying individual family members and friends who are committed to helping can provide needed support to the patient and help with difficult transitions. Including others who are looking for a useful role to play can promote a sense of community and reduce the feeling for caregivers and patients that they are alone. Creating new, flexible solutions to changing circumstances can also serve as a way to help cope with the changing nature of the illness. Recognizing that the old way of doing things may no longer be useful can help families to come up with new and innovative ways of dealing with change.

    It is difficult to summarize a single approach to coping, because every patient, family, and disease is different. But it is important to recognize how stress is affecting you. If your response to stress feels extreme or persists over time, consider consulting your doctor or a counselor.

    Many people rely on family and friends or their spiritual community for support. Medical social workers can connect you with local resources. Support groups, including internet-based groups, can often provide contact with other people in a similar situation. A good support system is also important to help families cope with the crisis brought on by a child’s brain tumor diagnosis.

    There are organizations with resources available to help patients and their families cope with the disease. Some hold summer camps for children with cancer and their siblings. Wish-fulfillment agencies grant wishes for children with life-threatening illnesses.

    These are some of the resources available to help patients and their families cope:

    National Brain Tumor Society Support Group Listings
    800.934.CURE (800.934.2873)

    Cancer Care Counseling Line
    800.813.HOPE (800.813.4673)
    www.cancercare.org

    National Family Caregivers Association
    800.896.3650
    www.nfcacares.org

    Well Spouse Foundation
    800.838.0879
    www.wellspouse.org

    Wellness Community
    310.453.2300 (National Headquarters)
    www.thewellnesscommunity.org

    For more information, see the publication entitled Coping with Your Loved One's Brain Tumor.


  14. 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.


  15. 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.


  16. Where can I get more information about pediatric brain tumors?

    You can visit our 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.