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GENERAL INFORMATION

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 About Brain Tumors

 What to Expect

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TREATMENT OPTIONS

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Johns Hopkins Medicine
The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Stereotactic Radiosurgery
 

About Brain Tumors

> Brain Tumors At A Glance

Treatment Methods:

Side Effects of Treatment:

> Support Information

> Surgery

> Surgery

> Resources for Patients

> Radiation

> Radiation

> Treatment for Brain Tumors

> Stereotactic Radiosurgery

> Chemotherapy

 

> Chemotherapy

> Loss of Appetite

 

> Hyperthermia

> Rehabilitation

 

> Clinical Trials

> Blood Clots

 

> Other Therapies

 

Brain Tumors At A Glance
• Brain tumors can be either malignant or benign.
• The causes of brain tumors are not known.
• Brain tumors can occur at any age.
• Primary brain tumors initially form in the brain tissue.
• Secondary brain tumors are cancers that have spread to the brain tissue from tissue elsewhere in the body.
• The symptoms of brain tumors depend on their size and their location in the brain.
• Brain tumors are diagnosed by the doctor based on the results of a medical history and physical examination and results of a variety of specialized tests of the brain and nervous system.
• Treatment of a brain tumor depends on the type, location, and size of the tumor, as well as the age and health of the patient.

Treatment for Brain Tumors
Treatment for a brain tumor depends on a number of factors. Among these are the type, location, and size of the tumor, as well as the patient's age and general health. Treatment methods and schedules often vary for children and adults. A treatment plan is developed to fit each patient's needs. The patient's doctor may want to discuss the case with other doctors who treat brain tumors. Also, the patient may want to talk with the doctor about taking part in a research study of new treatment methods. Such studies are called clinical trials.

Many patients want to learn all they can about their disease and their treatment choices so they can take an active part in decisions about their medical care. A person with a brain tumor will have many questions, and the doctor is the best person to answer them. Most patients want to know what kind of tumor they have, how it can be treated, how effective the treatment is likely to be, and how much it is likely to cost. Many people find it helpful to make a list of their questions before they see the doctor. Taking notes can make it easier to remember what the doctor says. Some patients also find that it helps to have a family member or friend with them when they talk with the doctor, either to take part in the discussion or just to listen. Patients and their families have a lot to learn about brain tumors and their treatment. They should not feel that they need to understand everything the first time they hear it. They will have other chances to ask the doctor to explain things that are not clear.

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Treatment Methods
Brain tumors are treated with surgery, radiation therapy, and chemotherapy. Depending on the patient's needs, several methods may be used. The patient may be referred to doctors who specialize in different kinds of treatment and work together as a team. This medical team often includes a neurosurgeon, a medical oncologist, a radiation oncologist, a nurse, a dietitian, and a social worker. The patient also might work with a physical therapist, an occupational therapist, and a speech therapist. During and after treatment begins, most patients are given steroids, which are drugs that relieve swelling (edema). They also may be given anticonvulsant medicine to prevent or control seizures. If hydrocephalus (a condition which results in fluid accumulation around the brain) is present, the patient may need a shunt to drain the cerebrospinal fluid. A shunt is a long, thin tube placed in a ventricle of the brain and then threaded under the skin to another part of the body, usually the abdomen. It works like a drainpipe: excess fluid is carried away from the brain and is absorbed in the abdomen. (In some cases, the fluid is drained into the heart).

Surgery for Brain Tumors
Surgery is the usual treatment for most brain tumors. To remove a brain tumor, a neurosurgeon makes an opening in the skull. This operation is called a craniotomy. Whenever possible, the surgeon attempts to remove the entire tumor. However, if the tumor cannot be completely removed without damaging vital brain tissue, the doctor removes as much of the tumor as possible. Partial removal helps to relieve symptoms by reducing pressure on the brain and reduces the amount of tumor to be treated by radiation therapy or chemotherapy. Some tumors cannot be removed. In such cases, the doctor may do only a biopsy. A small piece of the tumor is removed so that a pathologist can examine it under a microscope to determine the type of cells it contains. This helps the doctor decide which treatment to use. Sometimes, a biopsy is done with a needle. Doctors use a special head frame (like a halo) and CT scans or MRI to pinpoint the exact location of the tumor. The surgeon makes a small hole in the skull and then guides a needle to the tumor. (Using this technique to do a biopsy or for treatment is called stereotaxis).

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Radiation Therapy
Radiation therapy (also called radiotherapy) is the use of high-powered rays to damage tumor cells and stop them from growing. It is often used to destroy tumor tissue that cannot be removed with surgery or to kill cancer cells that may remain after surgery. Radiation therapy is also used when surgery is not possible. Radiation therapy may be given in two ways. External radiation comes from a large machine. Generally, external radiation treatments are given 5 days a week for several weeks. The treatment schedule depends on the type and size of the tumor and the age of the patient. Giving the total dose of radiation over an extended period helps to protect healthy tissue in the area of the tumor.

Radiation can also come from radioactive materials placed directly in the tumor (implant radiation therapy). Depending on the material used, the implant may be left in the brain for a short time or permanently. Implants lose a little radioactivity each day. The patient stays in the hospital for several days while the radiation is most active. External radiation may be directed just to the tumor and the tissue close to it or, less often, to the entire brain. (Sometimes the radiation is also directed to the spinal cord). When the whole brain is treated, the patient often receives an extra dose of radiation to the area of the tumor. This boost can come from external radiation or from an implant.

Stereotactic Radiosurgery
Stereotactic radiosurgery is another way to treat brain tumors. High-energy rays are aimed at the tumor from many angles. In this way, a high dose of radiation reaches the tumor without damaging other brain tissue.

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Chemotherapy
Chemotherapy is the use of drugs to kill cancer cells. The doctor may use just one drug or a combination, usually giving the drugs by mouth or by injection into a blood vessel or muscle. Intrathecal chemotherapy involves injecting the drugs into the cerebrospinal fluid. Chemotherapy is usually given in cycles: a treatment period followed by a recovery period, then another treatment period, and so on. Patients often do not need to stay in the hospital for treatment. Most drugs can be given in the doctor's office or the outpatient clinic of a hospital. However, depending on the drugs used, the way they are given, and the patient's general health, a short hospital stay may be necessary.

Clinical Trials
Researchers are looking for treatment methods that are more effective against brain tumors and have fewer side effects. When laboratory research shows that a new method has promise, doctors use it to treat cancer patients in clinical trials. These trials are designed to answer scientific questions and to find out whether the new approach is both safe and effective. Patients who take part in clinical trials make an important contribution to medical science and may have the first chance to benefit from improved treatment methods. Many clinical trials of new treatments for brain tumors are under way. Doctors are studying new types and schedules of radiation therapy, new anticancer drugs, new drug combinations, and combinations of chemotherapy and radiation. Scientists are trying to increase the effectiveness of radiation therapy by giving treatments twice a day instead of once. Also, they are studying drugs called radiosensitizers. These drugs make the cancer cells more sensitive to radiation.

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Hyperthermia
Another method under study is hyperthermia, in which the tumor is heated to increase the effect of radiation therapy. Many drugs cannot reach the brain cells because of the blood-brain barrier, a network of blood vessels and cells that filters blood going to the brain. Researchers continue to look for new drugs that will pass through the blood-brain barrier. Studies are under way using different techniques to temporarily disrupt the barrier so that drugs can reach the tumor.

Other Therapies
In other studies, scientists are exploring new ways to give the drugs. Drugs may be injected into an artery leading to the brain or may be put directly into the ventricles. Doctors also are studying the effectiveness of placing tiny wafers containing anticancer drugs directly into the tumor. (The wafers dissolve over time).

Researchers are also testing the use of very high doses of anticancer drugs. Because these higher doses may damage healthy bone marrow, doctors combine this treatment with bone marrow transplantation to replace the marrow that has been destroyed.

Biological therapy is a new way of treating brain tumors that is currently under study. This type of treatment is an attempt to improve the way the body's immune system fights disease.

Patients interested in taking part in a clinical trial should discuss this option with their doctor. They may want to read "What Are Clinical Trials All About?", a National Cancer Institute (NCI) booklet that explains some of the possible benefits and risks of treatment studies. One way to learn about clinical trials is through PDQ, a computerized resource of cancer treatment information. Developed by NCI, PDQ contains an up-to-date list of trials in progress all over the country. Doctors can use a personal computer or the services of a medical library to get PDQ information.

The Cancer Information Service, at 1-800-4-CANCER, is another source of PDQ information for doctors, patients, and the public.

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What are the Side Effects of Treatment for Brain Cancer?
Cancer treatment often causes side effects. These side effects occur because treatment to destroy cancer cells damages some healthy cells as well. The side effects of cancer treatment vary. They depend on the type of treatment used and on the area being treated. Also, each person reacts differently. Attempts are made to plan the patient's therapy to keep side effects to a minimum. Patients are very carefully watched so that any problems which occur can be addressed.

Side Effects of Surgery
A craniotomy is a major operation. The surgery may damage normal brain tissue, and edema may occur. Weakness, coordination problems, personality changes, and difficulty in speaking and thinking can result. Patients can also have seizures. In fact, for a short time after surgery, symptoms may be worse than before. Most of the side effects of surgery lessen or disappear with time.

Side Effects of Radiation Therapy
Most of the side effects of radiation therapy go away soon after treatment is over. However, some side effects may occur or persist long after treatment is completed. Some patients have nausea for several hours after treatment. Patients receiving radiation therapy may become very tired as treatment continues. Resting is important, but doctors usually advise their patients to try to stay reasonably active. Radiation therapy to the scalp causes most patients to lose their hair. When it grows back, the new hair is sometimes softer and may be a slightly different color. In some cases, hair loss is permanent. Skin reactions in the treated area are common. The scalp and ears may be red, itchy, or dark. These areas may look and feel sunburned. The treated area should be exposed to the air as much as possible but should be protected from the sun. Patients should not wear anything on the head that might cause irritation.

Good skin care is important at this time. The doctor may suggest certain kinds of soap or ointment, and patients should not use any other lotions or creams on the scalp without the doctor's advice. Sometimes, brain cells killed by radiation form a mass in the brain. The mass may look like a tumor and may cause similar symptoms, such as headaches, memory loss, or seizures. Doctors may suggest steroids to relieve these problems. About 4 to 8 weeks after radiation therapy, patients may become quite sleepy or lose their appetite. These symptoms may last several weeks, but they usually go away on their own. Still, patients should notify the doctor if they occur.

Children who have had radiation therapy for a brain tumor may have learning problems. If the pituitary gland is damaged, children may require hormone therapy to grow and develop normally.

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Side Effects of Chemotherapy
The side effects of chemotherapy depend on the drugs that are given. In general, anticancer drugs affect rapidly growing cells, such as blood cells that fight infection, cells that line the digestive tract, and cells in the hair follicles. As a result, patients may have a lowered resistance to infection, loss of appetite, nausea, vomiting, or mouth sores. Patients also may have less energy and lose their hair. These side effects usually go away gradually after treatment stops.

Some anticancer drugs can cause infertility. Women taking certain anticancer drugs may have symptoms of menopause (hot flashes and vaginal dryness; periods may be irregular or stop). Some drugs used to treat children and teenagers may affect their ability to have children later in life. Certain drugs used in the treatment of brain tumors can cause kidney damage. Patients are given large amounts of fluid while taking these drugs. Patients also may have tingling in the fingers, ringing in the ears, or difficulty hearing. These problems may not clear up after treatment stops. Treatment with steroids to reduce swelling in the brain can cause increased appetite and weight gain. Swelling of the face and feet is common. Steroids can also cause restlessness, mood swings, burning indigestion, and acne. Patients should not stop using steroids or change their dose without consulting the doctor, however. The use of steroids must be stopped gradually to allow the body time to adjust.

Loss of Appetite
Loss of appetite can be a problem for patients during therapy. People may not feel hungry when they are uncomfortable or tired. Some of the common side effects of cancer treatment, such as nausea and vomiting, can also make it hard to eat. Yet, good nutrition is important because patients who eat well generally feel better and have more energy. In addition, they may be better able to withstand the side effects of treatment. Eating well means getting enough calories and protein to help prevent weight loss, regain strength, and rebuild normal tissues. Many patients find that eating several small meals and snacks during the day works better than trying to have three large meals.

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Blood Clots
Patients being treated for a brain tumor may develop a blood clot and inflammation in a vein, most often in the leg. This is called thrombophlebitis. A patient who notices swelling in the leg, leg pain, or redness in the leg should notify the doctor right away. Doctors, nurses, and dietitians can explain the side effects of cancer treatment and can suggest ways to deal with them.

What is Rehabilitation after Brain Cancer Treatment?
Rehabilitation is a very important part of the treatment plan. The goals of rehabilitation depend on the patient's needs and how the tumor has affected his or her daily activities. The medical team makes every effort to help patients return to their normal activities as soon as possible. Patients and their families may need to work with an occupational therapist to overcome any difficulty in activities of daily living, such as eating, dressing, bathing, and using the toilet. If an arm or leg is weak or paralyzed, or if a patient has problems with balance, physical therapy may be necessary. Speech therapy may be helpful for individuals having trouble speaking or expressing their thoughts. Speech therapists also work with patients who are having difficulty swallowing. If special arrangements are necessary for school-age children, they should be made as soon as possible. Sometimes, children have tutors in the hospital or after they go home from the hospital. Children who have problems learning or remembering what they learn may need tutors or special classes when they return to school. What happens after treatment for brain cancer? Regular follow-up is very important after treatment for a brain tumor. The doctor will want to check closely to be sure that the tumor has not returned. Check-ups usually include general physical and neurologic exams. From time to time, the patient will have CT scans or MRI.

Patients who receive radiation therapy to large areas of the brain or certain anticancer drugs may have an increased risk of developing leukemia or a second tumor at a later time. Also, radiation that affects the eyes may lead to the development of cataracts. Patients should carefully follow their doctor's advice on health care and checkups. If any unusual health problem occurs, they should report it to the doctor as soon as it appears.

The diagnosis of a brain tumor can change the lives of patients and the people who care about them. These changes can be hard to handle. Patients and their families may have many different and sometimes confusing emotions. At times, patients and those close to them may feel frightened, angry, or depressed. These are normal reactions when people face a serious health problem. Most patients, including children and teenagers, find it helps to share their thoughts and feelings with loved ones. Sharing can help everyone feel more at ease and can open the way for others to show their concern and offer their support. Worries about tests, treatments, hospital stays, rehabilitation, and medical bills are common. Parents may worry about whether their children will be able to take part in normal school or social activities. Doctors, nurses, social workers, and other members of the health care team may be able to calm fears and ease confusion. They also can provide information and suggest helpful resources. Patients and their families are naturally concerned about what the future holds. Sometimes, they use statistics to try to figure out whether the patient will be cured or how long he or she will live. It is important to remember, however, that statistics are averages based on large numbers of patients. They can't be used to predict what will happen to a certain patient because no two cancer patients are alike. The doctor who takes care of the patient and knows that person's medical history is in the best position to discuss the patient's outlook (prognosis). People should feel free to ask the doctor about their prognosis, but it is important to keep in mind that not even the doctor can tell exactly what will happen. When doctors talk about recovering from a brain tumor, they may use the term remission rather than cure. Even though many people recover completely, doctors use this term because a brain tumor can recur.

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What Support is Available to Cancer Patients?
Living with a serious disease is not easy. Everyone involved faces may problems and challenges. Finding the strength to cope with these difficulties is easier when people have helpful information and support services. The doctor can explain the disease and give advice about treatment, going back to work or school, or other activities. If patients want to discuss concerns about the future, family relationships, and finances, it also may help to talk with a nurse, social worker, counselor, or a member of the clergy. Friends and relatives who have had personal experience with cancer can be very supportive. Also, it helps many patients to meet and talk with other people who are facing problems like theirs. Cancer patients often get together in self-help and support groups, where they can share what they have learned about cancer and its treatment and about coping with the disease.

In addition to groups for adults with cancer, special support groups for children or teens with cancer or for parents whose children have cancer are available in many cities. It is important to keep in mind, however, that each patient is different. Treatments and ways of dealing with cancer that work for one person may not be right for another, even if they both have the same kind of cancer. It is a good idea to discuss the advice of friends and family members with the doctor. Often, a social worker at the hospital or clinic can suggest local and national groups that will help with rehabilitation, emotional support, financial aid, transportation, or home care. The American Cancer Society is one such group. This nonprofit organization has many services for patients and their families. The American Brain Tumor Association is another organization that can help patients find support groups in local areas. Candlelighters Childhood Cancer Foundation sponsors support groups for parents of children with cancer. In some cities, the Foundation has special groups for children or teens with cancer, as well.

Information about other programs and services for cancer patients and their families is available through the Cancer Information Service. The toll-free number is 1-800-4-CANCER.

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What Resources are Available to Brain Tumor Patients?
Information about brain tumors is available from many sources. Several are listed below. You may also wish to check for additional information at your local library or bookstore and from support groups in your community.

CANCER INFORMATION SERVICE (CIS)
1-800-4-CANCER
The Cancer Information Service, a program of the National Cancer Institute, is a nationwide telephone service for cancer patients, their families and friends, the public, and health care professionals. The staff can answer questions in English and Spanish and can send booklets about cancer. They also know about local resources and services. One toll-free number, 1-800-4- CANCER (1-800- 422-6237), connects callers with the office that serves their area.

AMERICAN CANCER SOCIETY (ACS)
1599 Clifton Road, N.E. Atlanta, GA 30329
1-800-ACS-2345
The American Cancer Society is a voluntary organization with a national office and local units all over the country. It supports research, conducts educational programs, and offers many services to patients and their families. To obtain free booklets about services and activities in local areas, call the Society's toll- free number, 1-800-ACS- 2345 (1-800-227-2345), or the number listed under "American Cancer Society" in the white pages of the telephone book.

AMERICAN BRAIN TUMOR ASSOCIATION (ABTA)
2720 River Road, Suite 146
Des Plains, Illinois 60018
1-800-886-ABTA or 847-827-9910
The American Brain Tumor Association supports research on brain tumors and provides information to the public through booklets and newsletters. This organization also provides resource listings of doctors, treatment facilities, and support groups throughout the country.

CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION (CCCF)
7910 Woodmont Avenue, Suite 460 Bethesda, MD 20814
1-800-366-CCCF
Candlelighters is a national organization of parents whose children have or have had cancer. It operates a patient information service and publishes newsletters for parents and young people. Local chapters sponsor family support groups.

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS)
NINDS Information Center
P. O. Box 5801
Bethesda, MD 20824
1-800-352-9424
The mission of NINDS is to reduce the burden of neurological disease

NEW APPROACHES TO BRAIN TUMOR THERAPY - NABTT
Central Office: Johns Hopkins Hospital
Bunting Blaustein Building, G87
1650 Orleans Street
Baltimore, MD 21231-1000
Telephone: 410-955-3657
The "New Approaches to Brain Tumor Therapy (NABTT)" CNS Consortium's goal is to improve the therapeutic outcome for adults with primary brain tumors. This consortium is one of two nationwide that is funded by the National Cancer Institute to conduct Phase I and II clinical evaluations of promising new treatment strategies.

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