Have you just found out that you have a brain tumor? If so, you likely have many questions about the diagnosis and treatment, you may also have concerns about the effect it could have on your life and future.
What is a Brain Tumor?
A brain tumor is a mass of abnormal cells in the brain. There are many types of brain tumors. They may be primary (starting in the brain) or metastatic (traveling to the brain from another part of the body). All brain tumors are either benign (made of up slow growing cells that rarely spread) or malignant (made up of fast-growing cells that invade surrounding tissue). Both benign and malignant tumors can be life-threatening and can require intensive treatment.
Brain Tumor Symptoms
The most common symptoms of brain tumors are:
Trouble thinking, remembering, or talking
Seizures or convulsions, causing numbness, weakness, or loss of consciousness
Paralysis or weakness in one part of the body
Loss of balance or lack of coordination
Nausea and vomiting
Changes in personality
The Treatment Plan
Brain tumors can be treated in a number of ways. Your doctor will evaluate your condition and discuss it with you. Together you will work out your treatment plan. Because there are many types of tumors, some of the treatments described in this booklet may not be right for you. Be sure to read the information that applies to your own treatment plan.
The Patient’s Role
Follow your treatment plan and keep a list of questions for your doctor. Try to stay flexible to changes in your treatment plan. Your family, friends, and healthcare provider are your support system. But you can seek further help by asking your healthcare provider about support groups.
The Family’s Role
Support the patient by offering to help with daily tasks. Go along to appointments, run errands, and cook. Help with filling out forms and balancing the checkbook. Be a good listener. Also, be sure to keep all family members involved, including children.
The Body’s Control Center
The brain is part of the body’s nervous system. It acts as the body’s control center. Breathing, blood pressure, heartbeat, and the ability to move and feel are all controlled by the brain. So are intelligence, emotions, and reasoning. A brain tumor can damage the parts of the brain that control these functions.
Roles of the Brain
Each part of the brain has a role. When you have a tumor, the part of the brain surrounding it may be damaged and the brain can not do its job properly. Following are the main parts of the brain and some of the functions they perform. (Note that some of the functions are controlled by more than one area.)
Telling right from left
Fine muscle control
What Causes Symptoms
Along with its location, the way a tumor grows can cause the symptoms you have. A tumor may affect the brain in one or more ways. It may:
Destroy normal brain tissue.
Press on normal brain tissue.
Increase pressure within the brain.
Evaluating Your Condition
Your doctor will perform an exam and tests to see if you have a tumor. This evaluation will also help your doctor find the location and size of the tumor.
Your Neurologic Exam
Your doctor will test how well your nervous system is working. This includes checking the following skills:
Muscle strength, coordination, reflexes, gait, balance, and sense of touch
Thinking and memory
Vision, hearing, talking, and swallowing
The following are the most common tests used to diagnose a brain tumor. Each of these tests is painless and provides pictures of the brain. Contrast dye may be injected to make a tumor easier to see. Tell the doctor if you think you’ll have a problem lying still during the test. Medication can be given to help you relax.
MRI (Magnetic Resonance Imaging)
MRI uses strong magnets and radio waves to form detailed pictures. For the test, you lie still on a long table that slides into a tunnel. A coil may be placed around your head Expect to hear loud banging noises during the test.
CT (Computed Tomography)
CT combines x-rays and computer processing technology to form 3-D pictures. The pictures provide cross-sectional views of the brain. For the test, you lie still on a platform that slides into a doughnut-shaped hole
Planning Your Treatment
After your evaluation, you and your doctor will discuss the best treatment plan for you. Many healthcare professionals will be involved in your care. They help guide you through your treatment choices, address your questions and concerns, and give you support.
The Members of Your Team
Following are some of the people who make up your healthcare team. You may already know a few of them:
A neuro-oncologist specializes in treating tumors of the nervous system.
A neurologist diagnoses and treats diseases of the nervous system.
A neurosurgeon operates on brain tumors and other problems of the nervous system.
A radiation oncologist specializes in using radiation therapy to treat tumors
A medical oncologist specializes in treating tumors with chemotherapy.
A nurse provides care and helps the doctor in managing a patient’s symptoms, adjusting medications, and performing medical exams.
A therapist teaches or helps a patient to improve strength and motor skills, relearn daily tasks, or improve language and swallowing skills.
A social worker or case manager provides support, answers questions, and helps patient work through the healthcare system.
Deciding What You Need
Your treatment plan is determined by the type, size, and location of your tumor. Your health history and age play a role, too. Your treatment may include: surgery, radiation, chemotherapy, or other medications Sometimes a tumor doesn’t require treatment yet but just needs to be watched. If this is the case, the most important part of your treatment plan will be the follow-up visits you keep with your doctor.
If You Have a Stereotactic Biopsy
Surgery to remove a tumor (resection) is the preferred treatment for most brain tumors. But if the tumor is in a hard place to reach or appears to be inoperable, you may need to have a stereotactic biopsy. During the biopsy procedure, a small sample of tumor tissue is taken so the doctor can learn more about your tumor. Then, further treatment is planned.
Before the Procedure
Part of your head may be shaved. Anesthesia is used to numb the part of your head where the biopsy will be done. Most patients remain awake during the procedure, but won’t feel pain as the surgeon works.
During the Procedure
The surgeon passes a narrow, hollow needle through the skull bone into the tumor. This process is done under the guidance of MRI or CT scans. A special frame may be used to hold the head in place. If no frame is used, a device, such as a wand, and 3-D images on a computer are used to map the tumor. This is so the surgeon knows where to insert the needle. Cells taken from the tumor are then examined in a lab.
Risks and Complications of a Stereotactic Biopsy
Stereotactic biopsy has certain risks and complications These include:
If You Have a Craniotomy
A craniotomy is the most common surgery used to remove a tumor. Here are some things to know to prepare for your surgery and your care after you return home.
Preparing for Surgery
A few days before surgery, you will need to do the following:
Have a physical exam to make sure you are strong enough for surgery.
Meet with your surgeon and sign consent forms.
Learn whether you should take your usual medications.
Not eat or drink anything, as directed
At Home After Surgery
You may need some help when you return home. Have people in mind to:
Drive you home from the hospital and to appointments.
Cook for you and take care of your house.
Help with childcare.
Keep track of doctors’ instructions
Help manage bills
Reassuring Your Child
If the patient is your child, learn more about the surgery and prepare your child in advance. Check with the preadmission department at your hospital for resources that might help. Books, pictures, teaching with puppets or dolls, and tours of the surgical wing may be offered. Many hospitals also have a child life specialist. This person has special training to help children prepare for their stay in the hospital.
The Craniotomy Procedure
On the day of surgery, arrive at the hospital on time. You may feel a little nervous. The hospital staff will do all they can to answer your questions and make you comfortable.
Just Before Surgery
The anesthesia care provider will talk to you about how you will be kept free from pain during surgery. At some point, an IV (intravenous) line will be placed in your arm to give you fluids and medication. All or part of your head will be shaved. How long the surgery takes depends on the size and location of the tumor. Your loved ones will be shown where to wait during this time.
The surgeon will make an incision in your scalp and remove a small piece of your skull bone Then as much of the brain tumor as possible will be removed. Surgery can be done using a number of techniques. The techniques used will depend on the tumor size and its location. When the surgery is complete, the bone will be put back. In certain cases, it will be replaced with artificial bone or left off. The incision will be closed with stitches or staples. These will be removed in about 7 to 10 days.
Risks and Complications of a Craniotomy
Craniotomy has certain risks and complications. These include:
Damage to brain functions
Right After Surgery
You will be in the intensive care unit (ICU) or recovery area after surgery. When you wake up, you may feel groggy. You may also have a dull headache and some body aches. You will be given medications to help ease your pain, reduce swelling, and prevent seizures. Monitors may be in place to measure your heart rate and the pressure inside your skull. You may be placed on a ventilator, which is a machine that helps you breathe. A thin, flexible tube to drain urine from the bladder may be placed until you are able to use the restroom. You may need to wear special stockings to help prevent blood clots.
In Your Hospital Room
You may be moved from the ICU or recovery area to your hospital room within hours. Or, it could take a day or two. Once there, you will be taught breathing exercises to keep your lungs clear. A nurse or therapist will help get you up and walking as soon as possible. You may also return to a normal diet at this time.
Your doctor may refer you to a rehabilitation center. There, therapists will help you with balance, strength, walking, talking, and other daily activities. Your rehabilitation may also take place at home. Social workers, case managers, and discharge planners can help arrange your continued care. You may work with one or more of them before you leave the hospital to decide what your needs are.
If You Have Radiation
The goal of radiation therapy is to slow or help control tumor growth. It uses painless x-rays to destroy tumor cells. Radiation therapy can be used alone or with other types of treatment. If your doctor has selected radiation therapy for you, you may have traditional radiation or stereotactic radiosurgery.
There are two main forms of traditional radiation: therapy focused and whole brain. Treatment is given in the same way for both types. With focused radiation, x-rays are aimed at the tumor and the area right around it. With whole brain radiation, x-rays are used on the entire brain, often to treat multiple tumors. The risks and side effects for both treatments are the same, though they may be more severe with whole brain radiation. Your experience for both may be as follows:
You may wear a facemask to keep your head from moving.
Small marks may be made on your head to focus the x-rays.
A large machine targets x-rays from several directions.
Your treatment is given in a series, such as 5 days a week for 4 to 7 weeks.
Risks and Complications of Traditional Radiation Therapy
The risks of traditional radiation therapy include
Skin changes in the treated area
Permanent hair loss
Necrosis (death of healthy brain tissue)
Stereotactic radiosurgery may be used along with traditional radiation. The procedure involves 1 to 3 high doses of radiation. Since each dose is very focused, the normal tissue around the tumor receives little or no radiation.
You may be fitted with a radiosurgery head-frame to keep your head in the correct position.
The tumor’s location is mapped with CT or MRI scans. Sometimes both are used.
Information from the headframe and scans is entered into a computer. This is used to focus the radiation.
A machine beams the radiation to the tumor. Two of the most common machines used are the gamma knife and the linear accelerator.
You will need to lie still during both the mapping and the treatment. You may be given medications to help you relax.
Risks and Complications of Stereotactic Radiosurgery
The risks of stereotactic radiosurgery include.
Temporary hair loss
Necrosis (death of healthy brain tissue)
Radiation implants are a form of low-dosage radiation that may slow or help control tumor growth. This treatment is known as brachytherapy (also called interstitial radiation). It may be used for small, localized tumors. With this process, the radiation attacks the tumor from within the body. The implants are placed in the brain during surgery, followed by a hospital stay.
Risks and Complications of Brachytherapy
The risks of brachytherapy include
Necrosis (death of healthy brain tissue)
If You Have Chemotherapy
Chemotherapy is a way of treating tumor cells with medications. One medication or a combination is given. Chemotherapy may be used alone or along with surgery or radiation therapy. Understanding what chemotherapy does, how it is given, and how to cope with possible side effects helps you know what to expect.
How Chemotherapy Works
Both normal and tumor cells grow and divide. But tumor cells grow, divide, and spread out of control. Chemotherapy kills growing cells by disturbing their life cycle.
How Chemotherapy Is Given
Chemotherapy is given in cycles. The cycles allow the body to rest and build healthy cells between treatments. You can receive your therapy in different ways:
By IV (injection into a vein or artery).
By mouth, as a pill.
As a wafer implanted in the brain. The wafer contains a chemotherapy agent that is released in the area where the tumor has been removed. The wafer may be implanted for weeks to months and may or may not need to be removed.
Coping with Side Effects
Chemotherapy can cause side effects in different parts of your body. This is because it acts on certain normal cells as well as tumor cells. Here are some common short-term side effects and tips to help control them:
For Nausea or Vomiting
Take antinausea medications as directed.
Eat small meals throughout the day.
Ask your doctor to refer you to a dietitian or nutritionist if needed.
For Low Blood Cell Counts
A low white blood cell count makes your body less able to fight infection. Wash your hands often. Avoid being around people who are sick.
A low platelet count increases the risk of bleeding. Avoid activities that could result in cuts or bruising.
A low red blood cell count, or anemia, may require treatment. Call your doctor if you are very tired and pale, short of breath, or have chest pain.
Medications to control nausea are often taken before meals.
Plan your schedule in advance. This allows you to save energy for specific activities and to take time to rest.
Take naps and short breaks as needed
For Mouth Sores
Brush your teeth after each meal to keep your mouth clean and prevent infection. Use a soft toothbrush.
Rinse with baking soda in water
Risks and Complications of Chemotherapy
The risks of chemotherapy include:
Damage to lungs, liver, or kidneys
Numbness or tingling in the hands and feet
If You Need Medications
Brain tumors often cause symptoms. Also, your treatment is likely to produce some side effects. To help you feel better, your doctor may prescribe medications. Your doctor or pharmacist can advise you about possible side effects of these medications. Be sure to tell your doctor about all prescription and over-the-counter medications, herbs, and supplements you take.
Steroids reduce brain swelling. Always take them as directed. Do not stop taking them without your doctor’s approval.
Side effects can include water retention, weight gain, hair growth, insomnia, stomach ulcers, increased risk of infection, and mood changes.
Anticonvulsants help prevent seizures or convulsions. Always take them as directed. You may have blood tests to make sure you get the right dosage.
Side effects can include trouble breathing, rash, balance problems, and dizziness.
You may also need other medications to manage symptoms and side effects:
Antinausea medications to control nausea
Antacids to control stomach acid
Laxatives or stool softeners to treat constipation
Medications to control pain
Hormones to replace ones that your body is not producing or to help treat certain types of tumors
Managing Your Care
It is important to plan for your care and future. Taking steps now can help ease questions or concerns you might have. Discuss legal and financial issues with your family ahead of time. Keep in mind that members of your healthcare team are there to help you with these issues.
Recording Your Decisions
Special legal forms help ensure that you will get the care you want if you can no longer speak for yourself. Depending on which state you live in, you may need to fill out one or both of the following forms:
A durable power of attorney for make healthcare decisions for you. This person is called an agent. The agent can decide on treatments for you only if you cannot speak for yourself, and even if you are expected to recover.
A living will explains in writing which treatments you want or do not want at the end of your life. It applies only if you will not live without medical treatment. It takes effect only when you can no longer speak for yourself. If you have questions or need forms, call your local hospital. Ask for the social services department. You can also call an attorney.
Paying for Treatment
Managing your hospital bills and treatment costs requires financial planning. You may also need help working through your insurance. Your social worker, case manager, or discharge planner can help answer your questions. You may be referred to a local or national group that provides services and financial aid. You may also qualify for programs that help with medication costs.
To decide what care you may need at home, you will meet with a social worker, case manager, or discharge planner before you leave the hospital. You may require home visits from a physical therapist. You may also need to find someone to help with day-to-day household tasks. Another option is to arrange for short-term or long-term care at a local medical facility.
Taking Life Day by Day
Adjusting to your diagnosis and treatment can be hard for both you and your loved ones. You may need to make changes to your daily routine. This may include shifting some of your responsibilities at work and at home or relying on others for help with some tasks. It will take time, but there are things you can do to make the process easier.
Adjusting to Daily Life
Say “yes” when people offer to help, such as with cooking and housework.
Arrange for childcare when you need a break. Have friends and family give rides and attend school games.
If you have been told not to drive at this time, get help setting up rides. Talk with your social worker, case manager, or discharge planner.
Ask your employer about taking time off or reducing work hours if needed or check into working from home where you can pace yourself.
Speak with your doctor or healthcare provider about how to stay active. Light exercise such as stretching or taking short walks may help you sleep better and boost your energy.
Talking to Your Family and Friends
You may find it tough or awkward to talk about your brain tumor and treatment. But it is a good idea to let family and friends know what you’re going through.
Tell them that showing they care is helpful and that it is okay if they do not know the right thing to say.
Expect people to respond in different ways. Some may seem angry. Others may refuse to hear any more, or seem too upbeat, saying everything will be fine. Know they all mean well.
Do not overwhelm children. Explain what is happening to the extent that they can understand. Do this whether the patient is your child or someone close to your child. When children sense that something is going on but it has not been explained, they may blame themselves.
Tips for Family and Friends
You and your loved one will go through stages of feelings. Your ability to both share these feelings and listen will help keep your loved one from feeling alone.
Understand that the abilities of your loved one may change over time. Symptoms and side effects may also cause your loved one to behave differently.
The treatments your loved one are having may seem frightening. To help ease fears, learn about how the treatments work.
Your loved one may feel guilty for relying on you so much. Make this easier by offering to help when you can and by arranging for others to be there when you can’t
Coping with Your Emotions
Learning how to cope with your illness takes courage and patience. You may feel upset about your diagnosis and resent the changes it is causing on your life. You may also be worried about your future and that of your loved ones. It’s normal to feel sad, angry, or afraid. But try to be positive and find ways to deal with your emotions. Staying involved with others can help.
Stay Involved with Others
You may not always feel like being with others, but try not to pull away from the people around you. Family and friends can offer help, listen, or keep your spirits up. Joining a support group for people with brain tumors also allows you to share your feelings with others who are going through similar experiences.
When You Feel Down
There will likely be times when you feel down or discouraged. Expect to have these feelings and accept that you may cope better on some days than others. Consider counseling, which can help you deal with your fears and concerns. If you find yourself feeling sad or hopeless most of the time, contact your doctor. These may be signs of depression, which can be treated with medications and therapy.
Common Signs of Depression
Over time, the stress caused by your illness can interfere with your daily life and relationships and lead to depression. Tell your doctor or healthcare provider if you experience any of the following signs of depression:
Feeling down most of the time
Feeling guilty or helpless
Losing pleasure in things you used to enjoy, such as reading, movies, or social events
Sleeping less or more than normal
Having a big increase or decrease in appetite or weight
Feeling restless or irritable
Feeling tired, weak, or low in energy
Having trouble focusing, remembering, or making decisions
For Caregivers: Taking Care of Yourself
Caregivers often put all of their energy into helping their loved one and may neglect their own needs. Remember that taking care of yourself is also important. Be sure to take breaks and ask for help when you need it. This will help you cope with your loved one’s condition and reduce stress.
Give Yourself a Break
Take some time away from caregiving by spending time on your own or with friends.
Read a book or watch a movie.
Exercise regularly or take walks.
Have a meal with friends.
Take a nap or a relaxing bath.
Play cards or board games with friends.
Pursue a hobby.
Try not to do everything yourself. Divide household tasks among family members. Accept help from friends or neighbors. Local caregiver groups may have services to provide temporary care for your loved one when you are busy or need a break. If you are feeling stressed or weighed down by your responsibilities, ask your doctor about counseling to help prevent burnout or depression.
A positive outlook helps while supporting your loved one. Here are things you can do to cope with your loved one’s illness:
Make sure you get enough food, rest, and exercise to keep from getting ill or exhausted.
Rethink your goals and priorities. Focus on what you can do in the present that is within your control.
Keep a calendar or schedule to organize activities and maintain a balance of responsibilities.
Talk openly with your loved one and other family or friends.
Continue to make plans with your loved one. Take a trip or do something simple, such as eating out together.
Keep a diary or journal. This allows you to express your feelings rather than hold them in.
Learning More About Brain Tumors
The better you understand your tumor and its treatment, the more in control you may feel. Learning some of the common words you hear during treatment can also help. Ask your doctor or nurse to suggest local and national resources.
Listed below are some national resources for information on brain tumors. You can also ask about local chapters when you contact these groups. Many research universities often have clinical trials on new modes of treatment. Talk to your doctor if you have questions about any information you find.
American Brain Tumor Association:
Brain Tumor Foundation for Children
American Cancer Society (ACS)
Cancer Information Service (National Cancer Institute
Local Support Groups
Ask your healthcare provider about your local American Cancer Society or other local support groups.
Words You May Hear
Benign: Slow-growing tumor, rarely spreads.
Biopsy: A surgical procedure during which a small sample of a tumor is taken for diagnosis and checked for grade and type.
Grade: The degree of aggressiveness of a tumor, it can range from 1 (lowest) to 4 (highest). This term may also be used when referring to benign or malignant tumors.
Intracranial pressure (ICP): Pressure within the brain.
Malignant: Fast-growing, invasive tumor.
Necrosis: Death of healthy brain tissue.
Nervous system: The brain and spinal cord, and the nerves branching from them.
Pathology: The study of changes in the cells and organs of the body that cause or are a result of disease.
Resection: Surgical removal of a tumor.
Stereotactic: A method of locating specific sites in the brain using computer software, a headframe, and imaging tests.
Common Tumor Types
Astrocytoma: A tumor that arises from the cells that make up the supportive tissue of the brain.
Glioblastoma multiforme (GBM): The most malignant astrocytoma. It grows quickly and aggressively.
Meningioma: A tumor that grows slowly from the meninges (covering) of the brain and spinal cord.
Metastatic brain tumor: A tumor that traveled to the brain from another part in the body
Oligodendroglioma: A tumor that arises from oligodendrocytes, a type of supportive brain tissue that provides insulation for the brain so that nerve signals stay intact.
Pituitary adenoma: A slow-growing benign tumor of the pituitary gland.
Primary brain tumor: A tumor that starts in the brain.
Primitive neuroectodermal tumor (PNET): A fast-growing malignant tumor that contains undeveloped brain cells. It occurs most often in the cerebrum (the frontal, temporal, parietal, and occipital lobes).
Medulloblastoma (MDL): A common form of a primitive neuroectodermal tumor (PNET), arising in the cerebellum. It occurs most often in children and young adults.
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