Many people with brain tumors want to take an active part in making decisions about their medical care. They want to learn all they can about their disease and their treatment choices. However, shock and stress after a diagnosis of a brain tumor can make it hard to think of everything to ask the doctor. It often helps to make a list of questions before an appointment. To help remember what the doctor says, patients may take notes or ask whether they may use a tape recorder. Some also want to have a family member or friend with them when they talk to the doctor – to take part in the discussion, to take notes, or just to listen.

 

The doctor may refer the patient to a specialist, or the patient may ask for a referral. Specialists who treat brain tumors include neurosurgeons, neurooncologists, medical oncologists, and radiation oncologists. The patient may be referred to other health care professionals who work together as a team. The medical team may include a nurse, dietitian, mental health counselor, social worker, physical therapist, occupational therapist, and speech therapist. Children may need tutors to help with schoolwork.

 

Preparing for treatment

The doctor can describe treatment choices and discuss the results expected with each treatment option. The doctor and patient can work together to develop a treatment plan that fits the patient's needs.

 

Treatment depends on a number of factors, including the type, location, size, and grade of the tumor. For some types of brain cancer, the doctor also needs to know whether cancer cells were found in the cerebrospinal fluid.

 

These are some questions a person may want to ask the doctor before treatment begins:

 

What type of brain tumor do I have?

Is it benign or malignant?

What is the grade of the tumor?

What are my treatment choices? Which do you recommend for me? Why?

What are the benefits of each kind of treatment?

What are the risks and possible side effects of each treatment?

What is the treatment likely to cost?

How will treatment affect my normal activities?

Would a clinical trial (research study) be appropriate for me? Can you help me find one?

 

Methods of treating brain tumors

People with brain tumors have several treatment options. Depending on the tumor type and stage, patients may be treated with surgery, radiation therapy, or chemotherapy. Some patients receive a combination of treatments.

 

In addition, at any stage of disease, patients may have treatment to control pain and other symptoms of the cancer, to relieve the side effects of therapy, and to ease emotional problems. This kind of treatment is called symptom management, supportive care, or palliative care.

 

The doctor is the best person to describe the treatment choices and discuss the expected results.

 

A patient may want to talk to the doctor about taking part in a clinical trial, which is a research study of new treatment methods. The section on "The promise of cancer research" has more information about clinical trials.

 

Surgery

Surgery is the usual treatment for most brain tumors. Surgery to open the skull is called a craniotomy. It is performed under general anesthesia. Before surgery begins, the scalp is shaved. The surgeon then makes an incision in the scalp and uses a special type of saw to remove a piece of bone from the skull. After removing part or all of the tumor, the surgeon covers the opening in the skull with that piece of bone or with a piece of metal or fabric. The surgeon then closes the incision in the scalp.

 

These are some questions a person may want to ask the doctor before having surgery:

 

How will I feel after the operation?

What will you do for me if I have pain?

How long will I be in the hospital?

Will I have any long-term effects? Will my hair grow back? Are there any side effects from using metal or fabric to replace the bone in the skull?

When can I get back to my normal activities?

What is my chance of a full recovery?

 

Sometimes surgery is not possible. If the tumor is in the brain stem or certain other areas, the surgeon may not be able to remove the tumor without damaging normal brain tissue. Patients who cannot have surgery may receive radiation or other treatment.

 

Radiation therapy

Radiation therapy (also called radiotherapy) uses high-energy rays to kill tumor cells. The radiation may come from X-rays, gamma rays, or protons. A large machine aims radiation at the tumor and the tissue close to it. Sometimes the radiation may be directed to the entire brain or to the spinal cord.

 

Radiation therapy usually follows surgery. The radiation kills tumor cells that may remain in the area. Sometimes, patients who cannot have surgery have radiation therapy instead.

 

The patient goes to a hospital or clinic for radiation therapy. The treatment schedule depends on the type and size of the tumor and the age of the patient. Each treatment lasts only a few minutes.

 

Doctors take steps to protect the healthy tissue around the brain tumor:

 

Fractionation. Radiation therapy usually is given five days a week for several weeks. Giving the total dose of radiation over an extended period helps to protect healthy tissue in the area of the tumor.

Hyperfractionation. The patient gets smaller doses of radiation two or three times a day instead of a larger amount once a day.

Stereotactic radiation therapy. Narrow beams of radiation are directed at the tumor from different angles. For this procedure, the patient wears a rigid head frame. An MRI or CT scan creates pictures of the tumor's exact location. The doctor uses a computer to decide on the dose of radiation needed, as well as the sizes and angles of the radiation beams. The therapy may be given during a single visit or over several visits.

3-dimensional conformal radiation therapy. A computer creates a 3-dimensional image of the tumor and nearby brain tissue. The doctor aims multiple radiation beams to the exact shape of the tumor. The precise focus of the radiation beams protects normal brain tissue.

Proton beam radiation therapy. The source of radiation is protons rather than X-rays. The doctor aims the proton beams at the tumor. Protons can pass through healthy tissue without damaging it.

These are some questions a person may want to ask the doctor before having radiation therapy:

 

Why do I need this treatment?

When will the treatments begin? When will they end?

How will I feel during therapy? Are there side effects?

What can I do to take care of myself during therapy?

How will we know if the radiation is working?

Will I be able to continue my normal activities during treatment?

 

Chemotherapy

Chemotherapy, the use of drugs to kill cancer cells, is sometimes used to treat brain tumors. The drugs may be given by mouth or by injection. Either way, the drugs enter the bloodstream and travel throughout the body. The drugs are usually given in cycles so that a recovery period follows each treatment period.

 

Chemotherapy may be given in an outpatient part of the hospital, at the doctor's office, or at home. Rarely, the patient may need to stay in the hospital.

 

Children are more likely than adults to have chemotherapy. However, adults may have chemotherapy after surgery and radiation therapy.

 

For some patients with recurrent cancer of the brain, the surgeon removes the tumor and implants several wafers that contain chemotherapy. Each wafer is about the size of a dime. Over several weeks, the wafers dissolve, releasing the drug into the brain. The drug kills cancer cells.

 

Patients may want to ask these questions about chemotherapy:

 

Why do I need this treatment?

What will it do?

Will I have side effects? What can I do about them?

When will treatment start? When will it end?

How often will I need checkups?

 

Side effects of treatment

Because treatment may damage healthy cells and tissues, unwanted side effects are common. These side effects depend on many factors, including the location of the tumor and the type and extent of the treatment. Side effects may not be the same for each person, and they may even change from one treatment session to the next. Before treatment starts, the health care team will explain possible side effects and suggest ways to help the patient manage them.

 

Surgery

Patients often have a headache or are uncomfortable for the first few days after surgery. However, medicine can usually control their pain. Patients should feel free to discuss pain relief with the doctor or nurse.

 

It is also common for patients to feel tired or weak. The length of time it takes to recover from an operation varies for each patient.

 

Other, less common, problems may occur. Cerebrospinal fluid or blood may build up in the brain. This swelling is called edema. The health care team monitors the patient for signs of these problems. The patient may receive steroids to help relieve swelling. A second surgery may be needed to drain the fluid. The surgeon may place a long, thin tube (shunt) in a ventricle of the brain. The tube is threaded under the skin to another part of the body, usually the abdomen. Excess fluid is carried from the brain and drained into the abdomen. Sometimes the fluid is drained into the heart instead.

 

Infection is another problem that may develop after surgery. If this happens, the health care team gives the patient an antibiotic.

 

Brain surgery may damage normal tissue. Brain damage can be a serious problem. The patient may have problems thinking, seeing, or speaking. The patient also may have personality changes or seizures. Most of these problems lessen or disappear with time. But sometimes damage to the brain is permanent. The patient may need physical therapy, speech therapy, or occupational therapy.

 

Radiation therapy

Some patients have nausea for several hours after treatment. The health care team can suggest ways to help patients cope with this problem. Radiation therapy also may cause patients to become very tired as treatment continues. Resting is important, but doctors usually advise patients to try to stay as active as they can.

 

In addition, radiation therapy commonly causes hair loss. Hair usually grows back within a few months. Radiation therapy also may affect the skin in the treated area. The scalp and ears may become red, dry, and tender. The health care team can suggest ways to relieve these problems.

 

Sometimes radiation therapy causes brain tissue to swell. Patients may get a headache or feel pressure. The health care team watches for signs of this problem. They can provide medicine to reduce the discomfort.

 

Radiation sometimes kills healthy brain tissue. This side effect is called radiation necrosis. Necrosis can cause headaches, seizures, or even the patient's death.

 

In children, radiation may damage the pituitary gland and other areas of the brain. This could cause learning problems or slow down growth and development. In addition, radiation during childhood increases the risk of secondary tumors later in life. Researchers are studying whether chemotherapy may be used instead of radiation therapy in young children with brain tumors. Side effects may be worse if chemotherapy and radiation therapy are given at the same time. The doctor can suggest ways to ease these problems.

 

Chemotherapy

The side effects of chemotherapy depend mainly on the drugs that are used. The most common side effects include fever and chills, nausea and vomiting, loss of appetite, and weakness. Some side effects may be relieved with medicine.

 

Patients who receive an implant (a wafer) that contains a drug are monitored by the health care team for signs of infection after surgery. An infection can be treated with an antibiotic.

 

Supportive care

At any stage of disease, people with brain tumors receive supportive care to prevent or control problems and to improve their comfort and quality of life during treatment. Patients may have treatment to control pain and other symptoms of a brain tumor, to relieve the side effects of therapy, and to ease emotional problems.

 

These are common types of supportive care for people with brain tumors:

 

Steroids. Most patients with brain tumors need steroids to help relieve swelling of the brain.

Anticonvulsant medicine. Brain tumors can cause seizures. Patients may take an anticonvulsant medicine to prevent or control seizures.

Shunt. If fluid builds up in the brain, the surgeon may place a shunt to drain the fluid.

 

Many people with brain tumors receive supportive care along with treatments intended to slow the progress of the disease. Some decide not to have antitumor treatment and receive only supportive care to manage their symptoms.

 

Rehabilitation

Rehabilitation can be a very important part of the treatment plan. The goals of rehabilitation depend on the person's needs and how the tumor has affected daily activities. The health care team makes every effort to help the patient return to normal activities as soon as possible. Several types of therapists can help:

 

Physical therapists. Brain tumors and their treatment may cause paralysis. They may also cause weakness and problems with balance. Physical therapists help patients regain strength and balance.

Speech therapists. Speech therapists help patients who have trouble speaking, expressing thoughts, or swallowing.

Occupational therapists. Occupational therapists help patients learn to manage activities of daily living, such as eating, using the toilet, bathing, and dressing.

Children with brain tumors may have special needs. Sometimes children have tutors in the hospital or at home. Children who have problems learning or remembering what they learn may need tutors or special classes when they return to school.

 

Follow-up care

Regular follow-up is very important after treatment for a brain tumor. The doctor checks closely to make sure that the tumor has not returned. Checkups may include careful physical and neurologic exams. From time to time, the patient may have MRI or CT scans. If the patient has a shunt, the doctor checks to see that it is working well. The doctor can explain the follow-up plan – how often the patient must visit the doctor and what tests will be needed.

 

Support for people with brain tumor

Living with a serious disease such as a brain tumor is not easy. Some people find they need help coping with the emotional and practical aspects of their disease. Support groups can help. In these groups, patients or their family members get together to share what they have learned about coping with the disease and the effects of treatment. Patients may want to talk with a member of their health care team about finding a support group. Groups may offer support in person, over the telephone, or on the Internet.

 

People living with a brain tumor may worry about caring for their families, keeping their jobs, or continuing daily activities. Concerns about treatments and managing side effects, hospital stays, and medical bills are also common. Doctors, nurses, and other members of the health care team can answer questions about treatment, working, or other activities. Meeting with a social worker, counselor, or member of the clergy can be helpful to those who want to talk about their feelings or discuss their concerns. Often, a social worker can suggest resources for financial aid, transportation, home care, or emotional support.

 

The promise of research

Doctors all over the country are conducting many types of clinical trials. These are research studies in which people take part voluntarily. Studies include new ways to treat brain tumors. Research has already led to advances, and researchers continue to search for more effective approaches.

 

Patients who join these studies have the first chance to benefit from treatments that have shown promise in earlier research. They also make an important contribution to medical science by helping doctors learn more about the disease. Although clinical trials may pose some risks, researchers take very careful steps to protect their patients.

 

Researchers are testing new anticancer drugs, doses, and treatment schedules. They are working with various drugs and drug combinations, as well as combinations of drugs and radiation therapy. They also are testing new methods and schedules of radiation therapy.

 

Patients who are interested in being part of a clinical trial should talk with their doctor.