Treatment Option Overview
There are different types of treatment for children with craniopharyngioma.
Different types of treatments are available for children with craniopharyngioma. 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 tumors. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.
Because tumors in children are rare, taking part in a clinical trial should be considered. Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI Web site 1. Choosing the most appropriate treatment is a decision that ideally involves the patient, family, and health care team.
Children with craniopharyngioma should have their treatment planned by a team of health care providers who are experts in treating brain tumors in children.
Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with tumors. The pediatric oncologist works with other pediatric healthcare 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.
- Radiation oncologist.
- Neurologist.
- Endocrinologist.
- Ophthalmologist.
- Rehabilitation specialist.
- Psychologist.
- Social worker.
- Nurse specialist.
Childhood brain tumors may cause symptoms that begin before diagnosis and continue for months or years.
Symptoms caused by the tumor may begin before diagnosis. These symptoms may continue for months or years. It is important to talk with your child's doctors about symptoms caused by the tumor that may continue after treatment.
Some treatments for tumors cause side effects months or years after treatment has ended.
Side effects from tumor treatment that begin during or after treatment and continue for months or years are called late effects. Late effects of tumor treatment may include the following:
- Physical problems such as vision problems and obesity.
- Changes in mood, feelings, thinking, learning, or memory.
- Second cancers (new types of cancer).
For example, serious late effects of radiation therapy for craniopharyngioma may include the following:
- Pituitary gland stops making hormones.
- Stroke or blood vessel problems.
- Blindness.
- Second cancer in the area that received radiation.
Some late effects may be treated or controlled. It is important to talk with your child's doctors about the effects tumor treatment can have on your child. (See the PDQ summary on Late Effects of Treatment for Childhood Cancer 2 for more information).
Five types of treatment are used:
The way the surgery is done depends on the size of the tumor and where it is in the brain. It also depends on whether the tumor has grown into nearby tissue in a finger-like way. The types of surgery include the following:
- Transsphenoidal surgery: A type of surgery in which the instruments are inserted into part of the brain by going through an incision (cut) made under the upper lip or at the bottom of the nose between the nostrils and then through the sphenoid bone (a butterfly-shaped bone at the base of the skull).
- Craniotomy: Surgery to remove the tumor through an opening made in the skull.
Sometimes all of the tumor that can be seen is removed in surgery and no further treatment is needed. At other times, it is more difficult to remove the tumor because it is growing into or pressing on nearby organs. Serious problems may occur if the pituitary gland, hypothalamus, optic nerves, or carotid artery are affected during surgery.
If there is tumor remaining after the surgery, radiation therapy is usually given to kill any tumor cells that are left. Treatment given after the surgery, to lower the risk that the cancer will come back, is called adjuvant therapy.
After surgery, follow-up testing with MRI will be done for several years to check if the tumor has come back. Also, if part of the pituitary gland is removed in surgery, several types of pituitary hormone replacement pills will be given for life.
Surgery may be done to drain tumors that are mostly cyst. This lowers pressure in the brain and relieves symptoms. A catheter (thin tube) is inserted into the cyst and a small container is placed under the skin. The fluid drains into the container and is later removed. Sometimes, after the cyst is drained, a drug that causes the inside wall of the cyst to scar is put through the catheter into the cyst. This is done to stop the cyst from making fluid or to increase the amount of the time it takes for the fluid to build up again. Surgery to remove the tumor may be done after the cyst is drained.
Limited surgery and radiation therapy
Limited surgery is used to treat some craniopharyngiomas. It is used to diagnose the tumor, remove fluid from a cyst, and relieve any pressure on the optic nerves. Limited surgery is followed by radiation therapy. This treatment option may have fewer serious side effects than surgery to remove tumor from the pituitary gland or hypothalamus.
Radiation therapy is a tumor treatment that uses high-energy x-rays or other types of radiation to kill tumor 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 tumor. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the tumor. The way the radiation therapy is given depends on the type of tumor being treated and whether it has spread.
Because radiation therapy to the brain can affect growth and development in young children, ways of giving radiation therapy that have fewer side effects are being studied. These include:
- Stereotactic radiosurgery: For very small craniopharyngiomas at the base of the skull, stereotactic radiosurgery may be used. Stereotactic radiosurgery uses a head frame to aim radiation at the tumor only. This treatment is also called stereotaxic radiosurgery.
- Intracavitary radiation therapy: Intracavitary radiation therapy is a type of internal radiation therapy that may be used in tumors that are part solid mass and part fluid-filled cyst. Radioactive material is sent directly into the tumor, and causes less damage to the nearby hypothalamus and optic nerves.
Chemotherapy is a treatment that uses anticancer drugs to stop the growth of tumor 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 tumor cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the cerebrospinal fluid or an organ, the drugs mainly affect tumor cells in those areas (regional chemotherapy). Intracavitary chemotherapy is a type of regional chemotherapy that places drugs directly into a cavity, such as a cyst. The way the chemotherapy is given depends on the type of tumor being treated.
Biologic therapy is a treatment that uses the patient’s immune system to fight cancer. Substances made by the body or made in a laboratory are used to boost, direct, or restore the body’s natural defenses against cancer. This type of cancer treatment is also called biotherapy or immunotherapy. For craniopharyngioma, the biologic therapy drug is placed directly inside the tumor using a catheter.
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 medical research process. Clinical trials are done to find out if new treatments are safe and effective or better than the standard treatment.
Many of today's standard treatments 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 diseases 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.
Check for U.S. clinical trials from NCI's list of cancer clinical trials that are now accepting patients with childhood craniopharyngioma 5. 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 6.
Patients can enter clinical trials before, during, or after starting their treatment.
Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients who have not improved. There are also clinical trials that test new ways to stop a disease from recurring (coming back) or reduce the side effects of 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 clinical trials database.
Follow-up tests may be needed.
Some of the tests that were done to diagnose the disease or decide how to treat it 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.
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. These tests are sometimes called follow-up tests or check-ups.
Glossary Termsadjuvant therapy (A-joo-vunt THAYR-uh-pee)Additional cancer treatment given after the primary treatment to lower the risk that the cancer will come back. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy, targeted therapy, or biological therapy.biological therapy (BY-oh-LAH-jih-kul THAYR-uh-pee) Treatment to boost or restore the ability of the immune system to fight cancer, infections, and other diseases. Also used to lessen certain side effects that may be caused by some cancer treatments. Agents used in biological therapy include monoclonal antibodies, growth factors, and vaccines. These agents may also have a direct antitumor effect. Also called biological response modifier therapy, biotherapy, BRM therapy, and immunotherapy.blood vessel (blud VEH-sel) A tube through which the blood circulates in the body. Blood vessels include a network of arteries, arterioles, capillaries, venules, and veins.brain tumor (brayn TOO-mer) 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.carotid artery (kuh-RAH-tid AR-tuh-ree) A major artery that carries blood from the heart to the head. There is a carotid artery on each side of the neck, and each one splits into two branches. The interior branch carries blood to the brain and eyes, and the exterior branch carries blood to the face, tongue, and outside parts of the head.catheter (KA-theh-ter) A flexible tube used to deliver fluids into or withdraw fluids from the body.cavity (KA-vih-tee) A hollow area or hole. It may describe a body cavity (such as the space within the abdomen) or a hole in a tooth caused by decay.cell (sel) The individual unit that makes up the tissues of the body. All living things are made up of one or more cells.cerebrospinal fluid (seh-REE-broh-SPY-nul FLOO-id) The fluid that flows in and around the hollow spaces of the brain and spinal cord, and between two of the meninges (the thin layers of tissue that cover and protect the brain and spinal cord). Cerebrospinal fluid is made by tissue called the choroid plexus in the ventricles (hollow spaces) in the brain. Also called CSF.chemotherapy (KEE-moh-THAYR-uh-pee) Treatment with drugs that kill cancer cells.clinical trial (KLIH-nih-kul TRY-ul) A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease. Also called clinical study.condition (kun-DIH-shun) In medicine, a health problem with certain characteristics or symptoms.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.craniotomy (KRAY-nee-AH-toh-mee) An operation in which an opening is made in the skull.cyst (sist) A sac or capsule in the body. It may be filled with fluid or other material.diagnosis (DY-ug-NOH-sis) The process of identifying a disease, such as cancer, from its signs and symptoms.drain (drayn) In medicine, to remove fluid as it collects; or, a tube or wick-like device used to remove fluid from a body cavity, wound, or infected area.drug (drug) Any substance, other than food, that is used to prevent, diagnose, treat or relieve symptoms of a disease or abnormal condition. Also refers to a substance that alters mood or body function, or that can be habit-forming or addictive, especially a narcotic.endocrinologist (en-doh-krih-NAH-loh-jist) A doctor who specializes in diagnosing and treating hormone disorders.external radiation therapy (...RAY-dee-AY-shun THAYR-uh-pee) A type of radiation therapy that uses a machine to aim high-energy rays at the cancer from outside of the body. Also called external-beam radiation therapy.fluid (FLOO-id) A substance that flows smoothly and takes the shape of its container. Liquids and gases are fluids.follow-up (FAH-loh-up) Monitoring a person's health over time after treatment. This includes keeping track of the health of people who participate in a clinical study or clinical trial for a period of time, both during the study and after the study ends.gland (gland) An organ that makes one or more substances, such as hormones, digestive juices, sweat, tears, saliva, or milk. Endocrine glands release the substances directly into the bloodstream. Exocrine glands release the substances into a duct or opening to the inside or outside of the body.healthcare provider (HELTH-kayr proh-VY-der) A licensed person or organization that provides healthcare services.hormone (HOR-mone) One of many chemicals made by glands in the body. Hormones circulate in the bloodstream and control the actions of certain cells or organs. Some hormones can also be made in the laboratory.hypothalamus (HY-poh-THA-luh-mus) The area of the brain that controls body temperature, hunger, and thirst.immune system (ih-MYOON SIS-tem) The complex group of organs and cells that defends the body against infections and other diseases.incision (in-SIH-zhun) A cut made in the body to perform surgery.injection (in-JEK-shun) Use of a syringe and needle to push fluids or drugs into the body; often called a "shot."internal radiation therapy (in-TER-nul RAY-dee-AY-shun THAYR-uh-pee) A type of radiation therapy in which radioactive material sealed in needles, seeds, wires, or catheters is placed directly into or near a tumor. Also called brachytherapy, implant radiation therapy, and radiation brachytherapy.intracavitary (IN-truh-KA-vih-tayr-ee) Within a cavity or space, such as the abdomen, pelvis, or chest.intracavitary radiation therapy (IN-truh-KA-vih-tayr-ee RAY-dee-AY-shun THAYR-uh-pee) A type of internal radiation therapy in which radioactive material sealed in needles, seeds, wires, or catheters is placed directly into a body cavity such as the chest cavity or the vagina.late effects (layt eh-FEKTS) Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers.mass (mas) In medicine, a lump in the body. It may be caused by the abnormal growth of cells, a cyst, hormonal changes, or an immune reaction. A mass may be benign (not cancer) or malignant (cancer).medicine (MEH-dih-sin) Refers to the practices and procedures used for the prevention, treatment, or relief of symptoms of a diseases or abnormal conditions. This term may also refer to a legal drug used for the same purpose.MRI A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. MRI makes better images of organs and soft tissue than other scanning techniques, such as computed tomography (CT) or x-ray. MRI is especially useful for imaging the brain, the spine, the soft tissue of joints, and the inside of bones. Also called magnetic resonance imaging, NMRI, and nuclear magnetic resonance imaging.NCI NCI, part of the National Institutes of Health of the United States Department of Health and Human Services, is the Federal Government's principal agency for cancer research. It conducts, coordinates, and funds cancer research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer. Access the NCI Web site at http://www.cancer.gov. Also called National Cancer Institute.neurologist (noor-AH-loh-jist) A doctor who specializes in the diagnosis and treatment of disorders of the nervous system.neurosurgeon (NOOR-oh-SER-jun) A doctor who specializes in surgery on the brain, spine, and other parts of the nervous system.nurse (nurs) A health professional trained to care for people who are ill or disabled.obesity (oh-BEE-sih-tee) A condition marked by an abnormally high, unhealthy amount of body fat.ophthalmologist (OF-thul-MAH-loh-jist) A doctor who specializes in diagnosing and treating eye problems, including injury and disease.optic nerve (OP-tik nerv) The nerve that carries messages from the retina to the brain.organ (OR-gun) A part of the body that performs a specific function. For example, the heart is an organ.PDQ PDQ is an online database developed and maintained by the National Cancer Institute. Designed to make the most current, credible, and accurate cancer information available to health professionals and the public, PDQ contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics, complementary and alternative medicine, and supportive care; a registry of cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care. Most of this information, and more specific information about PDQ, can be found on the NCI's Web site at http://www.cancer.gov/cancertopics/pdq. Also called Physician Data Query.pediatric (pee-dee-A-trik) Having to do with children.pediatric oncologist (pee-dee-A-trik on-KAH-loh-jist) A doctor who specializes in treating children with cancer.pituitary gland (pih-TOO-ih-TAYR-ee...) A pea-sized organ attached to the part of the brain called the hypothalamus. It lies at the base of the brain above the back of the nose. The hypothalamus sends signals to the pituitary gland, which then makes hormones that control other glands and many of the body’s functions, including growth.psychologist (sy-KAH-loh-jist) A specialist who can talk with patients and their families about emotional and personal matters, and can help them make decisions.radiation (RAY-dee-AY-shun) Energy released in the form of particle or electromagnetic waves. Common sources of radiation include radon gas, cosmic rays from outer space, medical x-rays, and energy given off by a radioisotope (unstable form of a chemical element that releases radiation as it breaks down and becomes more stable).radiation oncologist (RAY-dee-AY-shun on-KAH-loh-jist) A doctor who specializes in using radiation to treat cancer.radiation therapy (RAY-dee-AY-shun THAYR-uh-pee) The use of high-energy radiation from x-rays, gamma rays, neutrons, protons, and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy). Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that travels in the blood to tissues throughout the body. Also called irradiation and radiotherapy.radioactive (RAY-dee-oh-AK-tiv) Giving off radiation.radioactive seed (RAY-dee-oh-AK-tiv...) A small, radioactive pellet that is placed in or near a tumor. Cancer cells are killed by the energy given off as the radioactive material breaks down and becomes more stable.recur (ree-KER) To come back or to return.regional chemotherapy (REE-juh-nul KEE-moh-THAYR-uh-pee) Treatment with anticancer drugs directed to a specific area of the body.rehabilitation specialist (REE-huh-BIH-lih-TAY-shun SPEH-shuh-list) A healthcare professional who helps people recover from an illness or injury and return to daily life. Examples of rehabilitation specialists are physical therapists and occupational therapists.research study (reh-SERCH STUH-dee) A scientific study of nature that sometimes includes processes involved in health and disease. For example, clinical trials are research studies that involve people. These studies may be related to new ways to screen, prevent, diagnose, and treat disease. They may also study certain outcomes and certain groups of people by looking at data collected in the past or future.secondary cancer (SEH-kun-dayr-ee KAN-ser) A term that is used to describe either a new primary cancer or cancer that has spread from the place in which it started to other parts of the body.side effect (side eh-FEKT) A problem that occurs when treatment affects healthy tissues or organs. Some common side effects of cancer treatment are fatigue, pain, nausea, vomiting, decreased blood cell counts, hair loss, and mouth sores.social worker (SOH-shul WUR-ker) A professional trained to talk with people and their families about emotional or physical needs, and to find them support services.solid tumor (SAH-lid TOO-mer) An abnormal mass of tissue that usually does not contain cysts or liquid areas. Solid tumors may be benign (not cancer), or malignant (cancer). Different types of solid tumors are named for the type of cells that form them. Examples of solid tumors are sarcomas, carcinomas, and lymphomas. Leukemias (cancers of the blood) generally do not form solid tumors.specialist (SPEH-shuh-list) In medicine, a doctor or other health care professional who is trained and licensed in a special area of practice. Examples of medical specialists include oncologists (cancer specialists) and hematologists (blood specialists).sphenoid sinus (SFEE-noyd SY-nus) A type of paranasal sinus (a hollow space in the bones around the nose). There are two large sphenoid sinuses in the sphenoid bone, which is behind the nose between the eyes. The sphenoid sinuses are lined with cells that make mucus to keep the nose from drying out.standard therapy (... THAYR-uh-pee) Treatment that experts agree is appropriate, accepted, and widely used. Also called best practice, standard medical care, and standard of care.stereotactic radiosurgery (STAYR-ee-oh-TAK-tik RAY-dee-oh-SER-juh-ree) A type of external radiation therapy that uses special equipment to position the patient and precisely give a single large dose of radiation to a tumor. It is used to treat brain tumors and other brain disorders that cannot be treated by regular surgery. It is also being studied in the treatment of other types of cancer. Also called radiation surgery, radiosurgery, and stereotaxic radiosurgery.stroke (stroke) In medicine, a loss of blood flow to part of the brain, which damages brain tissue. Strokes are caused by blood clots and broken blood vessels in the brain. Symptoms include dizziness, numbness, weakness on one side of the body, and problems with talking, writing, or understanding language. The risk of stroke is increased by high blood pressure, older age, smoking, diabetes, high cholesterol, heart disease, atherosclerosis (a build-up of fatty material and plaque inside the coronary arteries), and a family history of stroke.surgery (SER-juh-ree) A procedure to remove or repair a part of the body or to find out whether disease is present. An operation.symptom (SIMP-tum) An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.systemic chemotherapy (sis-TEH-mik KEE-moh-THAYR-uh-pee) Treatment with anticancer drugs that travel through the blood to cells all over the body.tissue (TIH-shoo) A group or layer of cells that work together to perform a specific function.transsphenoidal surgery (TRANS-sfee-NOY-dul SER-juh-ree) A type of surgery in which instruments are inserted into part of the brain by going through the nose and the sphenoid bone (a butterfly-shaped bone at the base of the skull). Transsphenoidal surgery is used to remove tumors of the pituitary gland.tumor (TOO-mer) An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer), or malignant (cancer). Also called neoplasm.vein (vayn) A blood vessel that carries blood to the heart from tissues and organs in the body.x-ray (EX-ray) A type of radiation used in the diagnosis and treatment of cancer and other diseases. In low doses, x-rays are used to diagnose diseases by making pictures of the inside of the body. In high doses, x-rays are used to treat cancer. |


