21st Century Pediatric Cancer Sourcebook: Brain and Spinal Cord Tumors - Neuroectodermal, Medulloblastoma, Glioma, Astrocytoma, Craniopharyngioma, Craniopharyngioma, CNS Tumors, Others
Edition 1.0 - March 2011
National Cancer Institute
Smashwords Edition
Copyright 2011 Progressive Management
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OncoLink * http://www.oncolink.upenn.edu/
eMedicine.com * http://www.emedicine.com/
American Cancer Society (ACS) * http://www.cancer.org/
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PART ONE
Chapter 1A: Childhood Brain and Spinal Cord Tumors Overview
Chapter 4A: Central Nervous System Embryonal Tumors
Chapter 7A: Atypical Teratoid/Rhabdoid
PART TWO
Chapter 1B Late Effects of Treatment for Childhood Cancer - Patient Version
Chapter 2B: Pediatric Supportive Care
Chapter 3B: Clinical Trials Background Information
Chapter 4B: Cancer Clinical Trials -The Basic Workbook
Chapter 5B: Cancer Clinical Trials - The In-Depth Program
Chapter 6B: Clinical Trials at NIH
Chapter 7B: How To Find A Cancer Treatment Trial: A Ten Step Guide
Chapter 8B: Taking Part in Cancer Treatment Research Studies
Chapter 9B: Cancer Clinical Trials
Chapter 10B: Access to Investigational Drugs
Chapter 12B: Taking Time: Support for People with Cancer
Chapter 13B: Facing Forward - Life After Cancer Treatment
Chapter 14B: When Someone You Love Is Being Treated For Cancer
Chapter 15B: Living Beyond Cancer: Finding a New Balance
Chapter 16B: Caring for the Caregiver
Chapter 17B: Young People With Cancer, A Handbook For Parents
Chapter 18B: When Cancer Returns
Chapter 19B: When Someone You Love Has Advanced Cancer / Support for Caregivers
Chapter 20B: Chemotherapy and You
Chapter 21B: Managing Chemotherapy Side Effects - Anemia
Chapter 22B: Managing Chemotherapy Side Effects - Appetite Changes
Chapter 23B: Managing Chemotherapy Side Effects - Bleeding Problems
Chapter 24B: Managing Chemotherapy Side Effects - Constipation
Chapter 25B: Managing Chemotherapy Side Effects - Memory Changes
Chapter 26B: Managing Chemotherapy Side Effects - Mouth and Throat Changes
Chapter 27B: Managing Chemotherapy Side Effects - Nerve Changes
Chapter 28B: Managing Chemotherapy Side Effects - Pain
Chapter 29B: Managing Chemotherapy Side Effects - Skin and Nail Changes
Chapter 30B: Managing Chemotherapy Side Effects - Swelling (Fluid retention)
Chapter 31B: Targeted Cancer Therapies
Chapter 33B : Follow-up Care After Cancer Treatment
Chapter 34B: Radiation Therapy and You
Chapter 36B: Understanding Radiation Therapy, What To Know About External Beam Radiation Therapy
Chapter 37B: Radiation Therapy for Cancer
Chapter 38B: Managing Radiation Therapy Side Effects - What To Do When Your Mouth or Throat Hurts
Chapter 39B: What To Do About Hair Loss (Alopecia)
Chapter 42B: Managing Radiation Therapy Side Effects - Changes When You Urinate
Chapter 43B: Managing Radiation Therapy Side Effects What To Do About Mild Skin Changes
Chapter 45B: General Cancer Information And Resources
Chapter 46B: Cancer And The Environment - What You Need to Know, What You Can Do
Chapter 48B: FDA Warning: Beware of Online Cancer Fraud
Chapter 49B: FDA Office of Oncology Drug Products
Chapter 50B: Understanding the HIPAA Privacy Rule
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Chapter 1A: Childhood Brain and Spinal Cord Tumors Treatment Overview
General Information About Childhood Brain and Spinal Cord Tumors * Stages of Childhood Brain and Spinal Cord Tumors * Recurrent Childhood Brain and Spinal Cord Tumors * Treatment Option Overview * Treatment Options by Type of Childhood Brain and Spinal Cord Tum Childhood Astrocytoma * Childhood Brain Stem Glioma * Childhood Central Nervous System Embryonal Tumors * Childhood Central Nervous System Germ Cell Tumors * Childhood Central Nervous System Primitive Neuroectodermal Tumors * Childhood Craniopharyngioma * Childhood Ependymoma * Childhood Ependymoblastoma * Childhood Malignant Glioma * Childhood Medulloblastoma * Childhood Medulloepithelioma * Childhood Spinal Cord Tumors * Childhood Tumors of the Pineal Region
A childhood brain or spinal cord tumor is a disease in which abnormal cells form in the tissues of the brain or spinal cord.
The brain controls many important body functions.
The spinal cord connects the brain with nerves in most parts of the body.
Brain and spinal cord tumors are a common type of childhood cancer.
There are different types of childhood brain and spinal cord tumors.
Astrocytomas
Brain Stem Glioma
Central Nervous System Embryonal Tumors
Central Nervous System Germ Cell Tumors
Central Nervous System Primitive Neuroectodermal Tumors
Craniopharyngioma
Ependymoma
Ependymoblastoma
Malignant Glioma
Medulloblastoma
Medulloepithelioma
Spinal Cord Tumors
Tumors of the Pineal Region
The cause of most childhood brain and spinal cord tumors is unknown.
The symptoms of childhood brain and spinal cord tumors are not the same in every child.
Tests that examine the brain and spinal cord are used to detect (find) childhood brain and spinal cord tumors.
Most childhood brain tumors are diagnosed and removed in surgery.
Some childhood brain and spinal cord tumors are diagnosed by imaging tests.
Certain factors affect prognosis (chance of recovery).
A childhood brain or spinal cord tumor is a disease in which abnormal cells form in the tissues of the brain or spinal cord.
There are many types of childhood brain and spinal cord tumors. The tumors are formed by the abnormal growth of cells and may begin in different areas of the brain or spinal cord. Together, the brain and spinal cord make up the central nervous system (CNS).
The tumors may be benign (not cancer) or malignant (cancer). Benign brain tumors grow and press on nearby areas of the brain. They rarely spread into other tissues. Malignant brain tumors are likely to grow quickly and spread into other brain tissue. When a tumor grows into or presses on an area of the brain, it may stop that part of the brain from working the way it should. Both benign and malignant brain tumors can cause symptoms and need treatment.
The brain controls many important body functions.
The brain has three major parts:
The cerebrum is the largest part of the brain. It is at the top of the head. The cerebrum controls thinking, learning, problem solving, emotions, speech, reading, writing, and voluntary movement.
The cerebellum, which is in the lower back of the brain (near the middle of the back of the head), controls movement, balance, and posture.
The brain stem connects the brain to the spinal cord. It is in the lowest part of the brain (just above the back of the neck). The brain stem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating.
The spinal cord connects the brain with nerves in most parts of the body.
The spinal cord is a column of nerve tissue that runs from the brain stem down the center of the back. It is covered by three thin layers of tissue called membranes. These membranes are surrounded by the vertebrae (back bones). Spinal cord nerves carry messages between the brain and the rest of the body, such as a signal from the brain to cause muscles to move or from the skin to the brain about the sense of touch.
Brain and spinal cord tumors are a common type of childhood cancer.
Although cancer is rare in children, brain and spinal cord tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Brain tumors can occur in both children and adults. Treatment for children is usually different than treatment for adults.
This summary describes the treatment of primary brain and spinal cord tumors (tumors that begin in the brain and spinal cord). Treatment of metastatic brain and spinal cord tumors, which are tumors formed by cancer cells that begin in other parts of the body and spread to the brain or spinal cord, is not covered in this summary.
There are different types of childhood brain and spinal cord tumors.
Childhood brain and spinal cord tumors are named based on the type of cell they formed in and where the tumor first formed in the CNS.
Astrocytomas
Childhood astrocytomas are tumors that form in cells called astrocytes. They can be low-grade or high-grade tumors. The grade of the tumor describes how abnormal the cancer cells look under a microscope and how quickly the tumor is likely to grow and spread. High-grade astrocytomas are fast-growing, malignant tumors. Low-grade astrocytomas are slow-growing tumors that are less likely to be malignant.
Brain Stem Glioma
Childhood brain stem gliomas form in the brain stem (the part of the brain connected to the spinal cord).
Central Nervous System Embryonal Tumors
Childhood CNS embryonal tumors form in brain and spinal cord cells when the fetus is beginning to develop. They include the following types of tumors:
Medulloblastoma.
CNS primitive neuroectodermal tumors (PNETs)
CNS atypical teratoid/rhabdoid tumors
Central Nervous System Germ Cell Tumors
Childhood CNS germ cell tumors form in germ cells, which are cells that develop into sperm or ova (eggs). Germ cell tumors can be either benign or malignant. There are different types of childhood germ cell tumors:
Germinomas.
Non-germinomas:
Embryonal carcinomas.
Yolk sac tumors.
Choriocarcinomas.
Teratomas.
Mixed germ cell tumors. A mixed germ cell tumor has two types of germ cells in it.
Germ cell brain tumors usually form in the center of the brain, near the pineal gland. The pineal gland is a tiny organ in the brain that makes melatonin, which is a substance that helps control the sleeping and waking cycle. Germ cell tumors can spread to other parts of the brain and spinal cord.
Central Nervous System Primitive Neuroectodermal Tumors
Childhood CNS primitive neuroectodermal tumors (PNETs) form in immature cells in the cerebrum.
Craniopharyngioma
Childhood craniopharyngiomas are tumors that usually form just above the pituitary gland. The pituitary gland is found in the center of the brain behind the back of the nose. It is about the size of a pea and controls many important body functions including growth. Craniopharyngiomas rarely spread, but may affect important areas of the brain, such as the pituitary gland.
Ependymoma
Childhood ependymomas are slow-growing tumors formed in cells that line the fluid -filled spaces in the brain and spinal cord.
Ependymoblastoma
Ependymoblastomas are fast-growing, malignant tumors formed by cells that line the fluid -filled spaces in the brain and spinal cord. These are rare tumors that are most common in infants and young children.
Malignant Glioma
Malignant gliomas are cancers of the brain that begins in glial cells (cells that surround and support nerve cells). Astrocytomas, oligodendrogliomas, and ependymomas are types of malignant gliomas.
Medulloblastoma
Childhood medulloblastomas form in the cerebellum. Medulloepithelioma
Medulloepitheliomas form in tissue made up of sensory cells that line tubelike spaces in the brain and spinal cord. These are rare tumors that are most common in infants and young children. They are usually malignant. Spinal Cord Tumors
Tumors of many different cell types may form in the spinal cord. Low-grade spinal cord tumors usually do not spread. High-grade spinal cord tumors may spread to other places in the spinal cord or brain.
Tumors of the Pineal Region
Pineal region tumors form in or near the pineal gland. The pineal gland is a tiny organ in the center of the brain. The gland makes melatonin, a substance that helps control our sleep cycle.
The cause of most childhood brain and spinal cord tumors is unknown.
The symptoms of childhood brain and spinal cord tumors are not the same in every child.
Headaches and other symptoms may be caused by childhood brain and spinal cord tumors. Other conditions may cause the same symptoms. A doctor should be consulted if any of the following problems occur:
Brain Tumors
Morning headache or headache that goes away after vomiting.
Frequent nausea and vomiting.
Vision, hearing, and speech problems.
Loss of balance and trouble walking.
Unusual sleepiness or change in activity level.
Unusual changes in personality or behavior.
Seizures.
Increase in the head size (in infants).
Spinal Cord Tumors
Back pain or pain that spreads from the back towards the arms or legs.
A change in bowel habits or trouble urinating.
Weakness in the legs.
Trouble walking.
In addition to these symptoms of brain and spinal cord tumors, some children are unable to reach certain growth and development milestones such as sitting up, walking, and talking in sentences.
Tests that examine the brain and spinal cord are used to detect (find) childhood brain and spinal cord tumors.
The following tests and procedures may be used:
Physical exam and history: An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
Neurological exam: A series of questions and tests to check the brain, spinal cord, and nerve function. The exam checks a person’s mental status, coordination, and ability to walk normally, and how well the muscles, senses, and reflexes work. This may also be called a neuro exam or a neurologic exam.
Serum tumor marker test: A procedure in which a sample of blood is examined to measure the amounts of certain substances released into the blood by organs, tissues, or tumor cells in the body. Certain substances are linked to specific types of cancer when found in increased levels in the blood. These are called tumor markers.
MRI (magnetic resonance imaging) with gadolinium: A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of the brain and spinal cord. A substance called gadolinium is injected into a vein. The gadolinium collects around the cancer cells so they show up brighter in the picture. This procedure is also called nuclear magnetic resonance imaging (NMRI).
CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
Angiogram: A procedure to look at blood vessels and the flow of blood in the brain. A contrast dye is injected into the blood vessel. As the contrast dye moves through the blood vessel, x-rays are taken to see if there are any blockages.
PET scan (positron emission tomography scan): A procedure to find malignant tumor cells in the body. A small amount of radioactive glucose (sugar) is injected into a vein. The PET scanner rotates around the body and makes a picture of where glucose is being used in the body. Malignant tumor cells show up brighter in the picture because they are more active and take up more glucose than normal cells do.
Most childhood brain tumors are diagnosed and removed in surgery.
If doctors think there might be a brain tumor, a biopsy may be done to remove a sample of tissue. For tumors in the brain, the biopsy is done by removing part of the skull and using a needle to remove a sample of tissue. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are found, the doctor may remove as much tumor as safely possible during the same surgery. The pathologist checks the cancer cells to find out the type and grade of brain tumor. The grade of the tumor is based on how abnormal the cancer cells look under a microscope and how quickly the tumor is likely to grow and spread.
The following tests may be done on the sample of tissue that is removed:
Immunohistochemistry study: A laboratory test in which a substance such as an antibody, dye, or radioisotope is added to a sample of cancer tissue to test for certain antigens. This type of study is used to tell the difference between different types of cancer.
Light and electron microscopy: A laboratory test in which cells in a sample of tissue are viewed under regular and high-powered microscopes to look for certain changes in the cells.
Cytogenetic analysis: A laboratory test in which cells in a sample of tissue are viewed under a microscope to look for certain changes in the chromosomes.
Some childhood brain and spinal cord tumors are diagnosed by imaging tests.
Sometimes a biopsy or surgery cannot be done safely because of where the tumor formed in the brain or spinal cord. These tumors are diagnosed based on the results of imaging tests and other procedures.
Certain factors affect prognosis (chance of recovery).
The prognosis (chance of recovery) depends on the following:
Whether there are any cancer cells left after surgery.
The type of tumor.
The location of the tumor.
The child's age.
Whether the tumor has just been diagnosed or has recurred (come back).
Stages of Childhood Brain and Spinal Cord Tumors
Key Points for This Section
In childhood brain and spinal cord tumors, treatment options are based on several factors.
The information from tests and procedures done to detect (find) childhood brain and spinal cord tumors is used to determine the tumor risk group.
There are three ways that cancer spreads in the body.
In childhood brain and spinal cord tumors, treatment options are based on several factors.
Staging is the process used to find how much cancer there is and if cancer has spread within the brain, spinal cord, or to other parts of the body. It is important to know the stage in order to plan cancer treatment.
In childhood brain and spinal cord tumors, there is no standard staging system. Instead, the plan for cancer treatment depends on several factors:
The type of tumor and where the tumor formed in the brain.
Whether the tumor is newly diagnosed or recurrent. A newly diagnosed brain or spinal cord tumor is one that has never been treated. A recurrent childhood brain or spinal cord tumor is one that has recurred (come back) after it has been treated. Childhood brain and spinal cord tumors may come back in the same place or in another part of the brain, or spinal cord. Sometimes they come back in another part of the body. The tumor may come back many years after first being treated. Tests and procedures, including biopsy, that were done to diagnose and stage the tumor may be done to find out if the tumor has recurred.
The grade of the tumor. The grade of the tumor is based on how abnormal the cancer cells look under a microscope and how quickly the tumor is likely to grow and spread. It is important to know the grade of the tumor and if there were any cancer cells remaining after surgery in order to plan treatment. The grade of the tumor is not used to plan treatment for all types of brain and spinal cord tumors.
The tumor risk group. Risk groups are either average risk and poor risk or low, intermediate, and high risk. The risk groups are based on the amount of tumor remaining after surgery, the spread of cancer cells within the brain and spinal cord or to other parts of the body, where the tumor has formed, and the age of the child. The risk group is not used to plan treatment for all types of brain and spinal cord tumors.
The information from tests and procedures done to detect (find) childhood brain and spinal cord tumors is used to determine the tumor risk group.
After the tumor is removed in surgery, some of the tests used to detect childhood brain and spinal cord tumors are repeated to help determine the tumor risk group (see the General Information section). This is to find out how much tumor remains after surgery. Other tests and procedures may be done to find out if cancer has spread:
Lumbar puncture: A procedure used to collect cerebrospinal fluid from the spinal column. This is done by placing a needle into the spinal column. Lumbar puncture is usually not used to stage childhood spinal cord tumors. This procedure is also called an LP or spinal tap.
Lumbar puncture. A patient lies in a curled position on a table. After a small area on the lower back is numbed, a spinal needle (a long, thin needle) is inserted into the lower part of the spinal column to remove cerebrospinal fluid (CSF, shown in blue). The fluid may be sent to a laboratory for testing.
Bone scan: A procedure to check if there are rapidly dividing cells, such as cancer cells, in the bone. A very small amount of radioactive material is injected into a vein and travels through the bloodstream. The radioactive material collects in the bones and is detected by a scanner.
Chest x-ray: An x-ray of the organs and bones inside the chest. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.
Bone marrow aspiration and biopsy: The removal of bone marrow, blood, and a small piece of bone by inserting a hollow needle into the hipbone or breastbone. A pathologist views the bone marrow, blood, and bone under a microscope to look for signs of cancer.
Bone marrow aspiration and biopsy. After a small area of skin is numbed, a Jamshidi needle (a long, hollow needle) is inserted into the patient’s hip bone. Samples of blood, bone, and bone marrow are removed for examination under a microscope.
There are three ways that cancer spreads in the body.
The three ways that cancer spreads in the body are:
Through tissue. Cancer invades the surrounding normal tissue.
Through the lymph system. Cancer invades the lymph system and travels through the lymph vessels to other places in the body.
Through the blood. Cancer invades the veins and capillaries and travels through the blood to other places in the body.
When cancer cells break away from the primary (original) tumor and travel through the lymph or blood to other places in the body, another (secondary) tumor may form. This process is called metastasis. The secondary (metastatic) tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the bones, the cancer cells in the bones are actually breast cancer cells. The disease is metastatic breast cancer, not bone cancer.
Recurrent Childhood Brain and Spinal Cord Tumors
A recurrent childhood brain or spinal cord tumor is one that has recurred (come back) after it has been treated. Childhood brain and spinal cord tumors may come back in the same place or in another part of the brain. Sometimes they may come back in another part of the body. The tumor may come back many years after first being treated. Diagnostic and staging tests and procedures, including biopsy, may be done to confirm the tumor has recurred.
Treatment Option Overview
Key Points for This Section
There are different types of treatment for children with brain and spinal cord tumors.
Children with brain or spinal cord tumors should have their treatment planned by a team of health care providers who are experts in treating childhood brain and spinal cord tumors.
Childhood brain and spinal cord tumors may cause symptoms that begin before diagnosis and continue for months or years.
Some cancer treatments cause side effects months or years after treatment has ended.
Three types of standard treatment are used:
Surgery
Radiation therapy
Chemotherapy
New types of treatment are being tested in clinical trials.
High-dose chemotherapy with stem cell transplant
Patients may want to think about taking part in a clinical trial.
Patients can enter clinical trials before, during, or after starting their cancer treatment.
Follow-up tests may be needed.
There are different types of treatment for children with brain and spinal cord tumors.
Different types of treatment are available for children with brain and spinal cord tumors. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.
Because cancer in children is rare, taking part in a clinical trial should be considered. Clinical trials are taking place in many parts of the country. Some clinical trials are open only to patients who have not started treatment.
Children with brain or spinal cord tumors should have their treatment planned by a team of health care providers who are experts in treating childhood brain and spinal cord tumors.
Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with cancer. The pediatric oncologist works with other health care providers who are experts in treating children with brain tumors and who specialize in certain areas of medicine. These may include the following specialists:
Neurosurgeon. * Neurologist. * Neuro-oncologist. * Neuropathologist. * Neuroradiologist. * Radiation oncologist. * Endocrinologist. * Psychologist. * Ophthalmologist. * Rehabilitation specialist. * Social worker. * Nurse specialist.
Childhood brain and spinal cord tumors may cause symptoms that begin before diagnosis and continue for months or years.
Childhood brain and spinal cord tumors may cause symptoms that continue for months or years. Symptoms caused by the tumor may begin before diagnosis. Symptoms caused by treatment may begin during or right after treatment.
Some cancer treatments cause side effects months or years after treatment has ended.
These are called late effects. Late effects of cancer treatment may include the following:
Physical problems.
Changes in mood, feelings, thinking, learning, or memory.
Second cancers (new types of cancer).
Some late effects may be treated or controlled. It is important to talk with your child's doctors about the effects cancer treatment can have on your child.
Three types of standard treatment are used:
Surgery
Surgery may be used to diagnose and treat childhood brain and spinal cord tumors as discussed in the General Information 11 section of this summary.
Radiation therapy
Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer.
Radiation therapy to the brain can affect growth and development in young children. For this reason, clinical trials are studying ways of using chemotherapy to delay, reduce, or end the need for radiation therapy. Also, ways of giving radiation therapy that lessen damage to healthy brain tissue are being used. Stereotactic radiosurgery is a type of radiation therapy that uses a rigid head frame attached to the skull to aim high-dose radiation beams directly at the tumors, which causes less damage to nearby healthy tissue. It is also called stereotaxic radiosurgery and radiation surgery. This procedure does not involve surgery.
The way the radiation therapy is given depends on the type and stage of the cancer being treated.
Chemotherapy
Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly in the cerebrospinal fluid, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated.
Anticancer drugs given by mouth or vein to treat brain and spinal cord tumors cannot cross the blood-brain barrier and enter the fluid that surrounds the brain and spinal cord. Instead, an anticancer drug is injected into the fluid-filled space to kill cancer cells there. This is called intrathecal chemotherapy.
New types of treatment are being tested in clinical trials.
This summary section describes treatments that are being studied in clinical trials. It may not mention every new treatment being studied. Information about clinical trials is available from the NCI Web site.
High-dose chemotherapy with stem cell transplant
High-dose chemotherapy with stem cell transplant is a way of giving high doses of chemotherapy and replacing blood -forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body’s blood cells.
Patients may want to think about taking part in a clinical trial.
For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the cancer research process. Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.
Many of today's standard treatments for cancer are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.
Patients who take part in clinical trials also help improve the way cancer will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.
Patients can enter clinical trials before, during, or after starting their cancer treatment.
Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose cancer has not gotten better. There are also clinical trials that test new ways to stop cancer from recurring (coming back) or reduce the side effects of cancer treatment.
Clinical trials are taking place in many parts of the country. See the Treatment Options section that follows for links to current treatment clinical trials. These have been retrieved from NCI's listing of clinical trials.
Follow-up tests may be needed.
Some of the tests that were done to diagnose the cancer or to find out the stage of the cancer may be repeated. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. This is sometimes called re-staging.
Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred (come back). These tests are sometimes called follow-up tests or check-ups.
Treatment Options by Type of Childhood Brain and Spinal Cord Tumor
A link to a list of current clinical trials is included for each treatment section. For some types or stages of cancer, there may not be any trials listed. Check with your doctor for clinical trials that are not listed here but may be right for you.
Childhood Astrocytoma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood astrocytoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Brain Stem Glioma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood brain stem glioma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Central Nervous System Embryonal Tumors
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood embryonal tumor. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Central Nervous System Germ Cell Tumors
Treatment of childhood central nervous system germ cell tumors may include:
Radiation therapy, usually to the whole brain and spine.
Chemotherapy.
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood central nervous system germ cell tumor. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Central Nervous System Primitive Neuroectodermal Tumors
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood supratentorial primitive neuroectodermal tumor. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Craniopharyngioma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood craniopharyngioma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Ependymoma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with newly diagnosed childhood ependymoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Ependymoblastoma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood ependymoblastoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Malignant Glioma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood cerebral astrocytoma/malignant glioma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Medulloblastoma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with untreated childhood medulloblastoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Medulloepithelioma
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood medulloepithelioma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Childhood Spinal Cord Tumors
Treatment of childhood spinal cord tumors depends on where the tumor forms in the spinal cord and what the cells look like under a microscope.
Childhood Tumors of the Pineal Region
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood pineal parenchymal tumor and childhood pineoblastoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.
Glossary Terms
abnormal
Not normal. An abnormal lesion or growth may be cancer, premalignant (likely to become cancer), or benign (not cancer).
angiogram (AN-jee-oh-gram)
An x-ray of blood vessels. The person receives an injection of dye to outline the vessels on the x-ray.
antibody (AN-tee-BAH-dee)
A protein made by plasma cells (a type of white blood cell) in response to an antigen (a substance that causes the body to make a specific immune response). Each antibody can bind to only one specific antigen. The purpose of this binding is to help destroy the antigen. Some antibodies destroy antigens directly. Others make it easier for white blood cells to destroy the antigen.
antigen (AN-tih-jen)
Any substance that causes the body to make a specific immune response.
astrocyte (AS-troh-site)
A large, star-shaped cell that holds nerve cells in place and helps them develop and work the way they should. An astrocyte is a type of glial cell.
astrocytoma (AS-troh-sy-TOH-muh)
A tumor that begins in the brain or spinal cord in small, star-shaped cells called astrocytes.
atypical teratoid/rhabdoid tumor (AY-TIH-pih-kul TER-uh-toyd/RAB-doyd TOO-mer)
An aggressive cancer of the central nervous system, kidney, or liver that occurs in very young children. Also called AT/RT and ATT/RHT.
benign (beh-NINE)
Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body. Also called nonmalignant.
biopsy (BY-op-see)
The removal of cells or tissues for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on the cells or tissue. There are many different types of biopsy procedures. The most common types include: (1) incisional biopsy, in which only a sample of tissue is removed; (2) excisional biopsy, in which an entire lump or suspicious area is removed; and (3) needle biopsy, in which a sample of tissue or fluid is removed with a needle. When a wide needle is used, the procedure is called a core biopsy. When a thin needle is used, the procedure is called a fine-needle aspiration biopsy.
blood
A tissue with red blood cells, white blood cells, platelets, and other substances suspended in fluid called plasma. Blood takes oxygen and nutrients to the tissues, and carries away wastes.
blood vessel
A tube through which the blood circulates in the body. Blood vessels include a network of arteries, arterioles, capillaries, venules, and veins.
bowel (BOW-ul)
The long, tube-shaped organ in the abdomen that completes the process of digestion. The bowel has two parts, the small bowel and the large bowel. Also called intestine.
brain stem
The part of the brain that is connected to the spinal cord.
brain stem glioma (...glee-OH-muh)
A tumor located in the part of the brain that connects to the spinal cord (the brain stem). It may grow rapidly or slowly, depending on the grade of the tumor.
brain tumor
The growth of abnormal cells in the tissues of the brain. Brain tumors can be benign (not cancer) or malignant (cancer).
cancer (KAN-ser)
A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is a cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is a cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord. Also called malignancy.
carcinoma (KAR-sih-NOH-muh)
Cancer that begins in the skin or in tissues that line or cover internal organs.
cell (sel)
The individual unit that makes up the tissues of the body. All living things are made up of one or more cells.
central nervous system (SEN-trul NER-vus SIS-tem)
The brain and spinal cord. Also called CNS.
central nervous system tumor (SEN-trul NER-vus SIS-tem TOO-mer)
A tumor of the central nervous system, including brain stem glioma, craniopharyngioma, medulloblastoma, and meningioma. Also called CNS tumor.
cerebellum (ser-uh-BEL-um)
The portion of the brain in the back of the head between the cerebrum and the brain stem. The cerebellum controls balance for walking and standing, and other complex motor functions.
cerebrum (seh-REE-brum)
The largest part of the brain. It is divided into two hemispheres, or halves, called the cerebral hemispheres. Areas within the cerebrum control muscle functions and also control speech, thought, emotions, reading, writing, and learning.
choriocarcinoma (KOR-ee-oh-KAR-sih-NOH-muh)
A malignant, fast-growing tumor that develops from trophoblastic cells (cells that help an embryo attach to the uterus and help form the placenta). Almost all choriocarcinomas form in the uterus after fertilization of an egg by a sperm, but a small number form in a testis or an ovary. Choriocarcinomas spread through the blood to other organs, especially the lungs. They are a type of gestational trophoblastic disease. Also called chorioblastoma, chorioepithelioma, and chorionic carcinoma.
chromosome (KROH-muh-some)
Part of a cell that contains genetic information. Except for sperm and eggs, all human cells contain 46 chromosomes.
contrast material
A dye or other substance that helps show abnormal areas inside the body. It is given by injection into a vein, by enema, or by mouth. Contrast material may be used with x-rays, CT scans, MRI, or other imaging tests.
craniopharyngioma (KRAY-nee-oh-fuh-RIN-jee-OH-muh)
A benign brain tumor that may be considered malignant because it can damage the hypothalamus, the area of the brain that controls body temperature, hunger, and thirst.
CT scan
A series of detailed pictures of areas inside the body taken from different angles. The pictures are created by a computer linked to an x-ray machine. Also called CAT scan, computed tomography scan, computerized axial tomography scan, and computerized tomography.
cytogenetics (SY-toh-jeh-NEH-tix)
The study of chromosomes and chromosomal abnormalities.
diagnosis (DY-ug-NOH-sis)
The process of identifying a disease, such as cancer, from its signs and symptoms.
electron microscope (ee-LEK-tron MY-kroh-SKOPE)
A microscope (device used to magnify small objects) that uses electrons (instead of light) to produce an enlarged image. An electron microscope shows tiny details better than any other type of microscope.
embryonal tumor
A mass of rapidly growing cells that begins in embryonic (fetal) tissue. Embryonal tumors may be benign or malignant, and include neuroblastomas and Wilms tumors. Also called embryoma.
ependymoma (eh-PEN-dih-MOH-muh)
A type of brain tumor that begins in cells lining the spinal cord central canal (fluid-filled space down the center) or the ventricles (fluid-filled spaces of the brain). Ependymomas may also form in the choroid plexus (tissue in the ventricles that makes cerebrospinal fluid). Also called ependymal tumor.
fetus (FEET-us)
The developing offspring from 7 to 8 weeks after conception until birth.
fluid (FLOO-id)
A substance that flows smoothly and takes the shape of its container. Liquids and gases are fluids.
gadolinium (GA-duh-LIH-nee-um)
A metal element that is used in magnetic resonance imaging (MRI) and other imaging methods. It is a contrast agent, which helps show abnormal tissue in the body during imaging with a special machine.