Brain Tumor Handbook
The purpose of this brain tumor handbook is to help patients and families find up-to-date sources of information and support specific to the Brain Tumor Program and Barrow Brain Tumor Research Center at Barrow Neurological Institute. During your stay in the hospital, your care will be provided not only by a team of doctors and nurses who are brain tumor experts but also by many other staff members. We hope this handbook will help you to learn about your brain tumor and how to talk about it with your treatment team.
You also can print a PDF file of the Brain Tumor Handbook here.
Each year, over 1,200 patients undergo brain tumor surgery at Barrow Neurological Institute—the most treated at any brain tumor center in the United States. To help you get back to your daily life as soon as possible, our multidisciplinary team of neurosurgeons, neuro-oncologists, radiation oncologists, nurse specialists, clinical therapists, and social workers is dedicated to providing you with state-of-the-art clinical care. Although your case is certainly not our first time dealing with this diagnosis, we recognize that it is your first time dealing with it. We created this handbook to help you and your family familiarize yourselves with your condition and to provide an accurate framework for you to better understand brain tumors.
At Barrow Neurological Institute, we individualize each patient’s treatment plan, so not everything described in these pages will apply to you. But it is always easier to navigate the system when you know what might be within the realm of possibilities. By compiling the latest information into a single booklet, we hope to help you make informed decisions as we partner with you on the diagnosis and treatment of your brain tumor.
For most patients, dealing with a brain tumor is more of a marathon than a sprint, so we encourage you and your friends and family to take care of yourselves. Get enough sleep, proper nutrition, and exercise to keepyourself healthy and focused. We will guide you through the diagnostic and treatment process step by step, from preoperative testing to neurosurgery and beyond. As you meet with many different specialists during this time, you can rest assured that we are all working in unison on your behalf.
You will soon learn that research and technology play central roles in the modern-day management of brain tumors. During your care, you will be exposed to the next generation of neurosurgical techniques, advanced brain imaging modalities, cutting-edge clinical therapeutics, and precision radiation therapies. In many cases, the latest clinical trials will also play a role in your care, as will basic science research. Because so many questions remain unanswered regarding the biology of all brain tumors, Barrow Neurological Institute, in partnership with the Barrow Brain Tumor Research Center, is constantly seeking to develop new therapies to target specific tumors.
Please look through this handbook at your convenience. Then let us know if you have questions or concerns.
Nader Sanai, MD
You may be seen by a number of doctors and staff during your stay in the hospital. Some of them will become members of your brain tumor treatment team.
Neurosurgeon: The surgeon who performs surgery to remove the brain tumor. The neurosurgeon also works with residents (doctors in training) who help provide care for you while you are in the hospital.
Neuro-oncologist: A neurologist with special training in the medical treatment of brain tumors using medications and chemotherapy. This doctor will closely follow your care and will address any new symptoms or concerns.
Neuropathologist: A doctor who makes the diagnosis of diseases of the brain and nervous system by examining the tissue under a microscope.
Radiation Oncologist: A doctor with special training who treats tumors with radiation. This doctor will also follow your care during radiation treatment sessions and afterward.
Medical Oncologist: A doctor with special training who treats cancers and tumors from other places in the body (such as the lung or breast). Medical oncologists also care for people with primary brain tumors if a neuro-oncologist is not available. If you are diagnosed with a metastatic brain tumor, you will be treated by a medical oncologist.
Nurse Practitioners (NPs): The NPs at Barrow have special training in the neuroscience field. Their role is to work with doctors and serve as the main contact person on your care team while you are in the hospital. An NP works closely with your neurosurgeon to direct your plan of care and teach you about your disease.
Nurse Navigator: A nurse who is a contact person to help bring you together with your care team after you leave the hospital. The nurse navigator can also help you connect with other sources of support.
Neuropsychologist: A doctor with special training in helping people who have trouble with their thinking and memory issues. If you need this doctor’s help, you would make an appointment after you go home.
Your neurosurgeon has a clinic within St. Joseph’s Hospital and Medical Center at:
Barrow Brain and Spine
2910 North Third Avenue
Phoenix, Arizona 85013
Office number: (602) 406-3181
If you had a visit in the hospital with a neuro-oncologist, you will follow up in the clinic located on the campus of St. Joseph’s Hospital and Medical Center.
Barrow Department of Neurology
240 West Thomas Road, Suite 400
Phoenix, Arizona 85013
Office number: (602) 406-6262
If you had a visit in the hospital with a radiation oncologist, you will have follow up at the clinic located within St. Joseph’s Hospital and Medical Center.
Radiation Neuro-Oncology & Cyberknife Department
350 West Thomas Road
Phoenix, Arizona 85013
Office number: (602) 406-3170
You may have one or more incisions on your head closed with staples or sutures (stitches). These will be removed at your clinic follow-up visit 7 to 14 days after surgery. Alternatively, you may have sutures that dissolve. These will not need to be removed and will absorb into your skin over the next few weeks. You may shower with mild soap and shampoo daily. Gently wash your incision and pat it dry. This is the only time you may touch your incision. Do not take a tub bath, go swimming, or get into a hot tub until the doctor says you can. Do not apply ointments, lotions, or creams to your incision.
To help reduce swelling and discomfort, you may apply an ice pack to the area every 30 minutes, as needed.
You should wear a hat outdoors to protect your head until your sutures or staples have been removed.
You may have some itching at your incision site, some jaw tightness, or trouble opening your mouth very wide for a few days after surgery. These conditions will improve as you continue to heal.
Avoid having your hair colored or permed for 4 to 6 weeks after surgery.
It is important to get out of bed and move about as soon as possible after surgery to avoid the risk of problems such as blood clots or pneumonia. If you feel unsteady on your feet, use help to walk. Get plenty of rest. Avoid any exhausting activity for 4 weeks. Walking for exercise is okay.
For the first 3 days you are home, do only light activity around the house. After that, you can slowly increase your activity, starting with a short walk 1 to 2 times a day.
For 8 weeks after surgery, do not do anything that would put you at risk of head trauma (such as skiing, snowboarding, biking, or contact sports). It takes 6 to 8 weeks for bone to heal.
Do not try to lift, push, or pull more than 10 pounds for 4 weeks after surgery.
Eat plenty of fruits and vegetables to prevent constipation. Drink 6 to 8 cups of water each day, which will also help prevent constipation.
You will receive a prescription (Rx) of pills for pain when you go home from the hospital. Here are some facts you need to know about pain pills:
- Pain pills are strong medicine and you need a paper prescription (Rx) by a doctor or NP to obtain strong medicines.
- The Rx cannot be called in to the pharmacy by a doctor or an NP.
- Some pain pills also have acetaminophen (Tylenol) mixed in them.
DO NOT Take Extra acetaminophen (Tylenol) with these two types of pain pills:
- oxycodone/acetaminophen (Percocet, Endocet)
- hydrocodone/acetaminophen (Vicodin, Norco)
You CAN take 650 mg of acetaminophen (Tylenol) every 4 to 6 hours, if needed, with these five types of pain pills:
- hydromorphone (Dilaudid)
When you feel that you no longer need your strong pain pills, you may take 650 mg of acetaminophen (Tylenol) every 4 to 6 hours, as needed.
Acetaminophen (Tylenol) is available over the counter—no Rx is needed.
Caution: Too much acetaminophen (Tylenol) can damage your liver. Do not take more than 4000mg in 24 hours.
To avoid side effects such as nausea, vomiting, or constipation, you should take your pain pills with food, and only as needed.
Do not drink alcohol or drive when taking prescription pain pills.
Steroids for Swelling
You may go home from the hospital on a steroid, usually dexamethasone, to decrease brain swelling. These pills relieve symptoms caused by pressure or swelling from the tumor. Once the swelling is under control, the steroid dose will be slowly decreased each day until it is eventually stopped. You will receive specific written instructions for stopping your steroid pills before you go home from the hospital.
Possible side effects of steroids include:
- Appetite changes
- Emotional changes
- Increased blood sugar
- Water retention or swelling in face, legs or feet
Your brain tumor symptoms might return when your steroid dose is lowered or stopped. You may also feel tired and emotionally down for a few days. If you do not feel better or if your symptoms worsen, call your doctor.
You may receive prescription (Rx) pills to control seizures. It is important to take these pills as directed and to not miss any doses. Discuss with your doctor whether you are allowed to drive.
Some common side effects of seizure pills are:
- Poor appetite
Postoperative nausea may be caused by your pain pills. If possible, take the pills with food. Eat small, frequent meals and avoid spicy or fried foods.
It may take 6 weeks or longer for your energy level to return to normal. You will probably feel very fatigued (tired) for the first 2 weeks before you notice a gradual increase in energy.
Not having normal bowel movements is a common problem after surgery. Constipation is caused by anesthesia, inactivity, and prescription pain pills.
Here are some tips to keep your bowels moving.
- Drink more water. (every day)
- Eat fresh fruits and vegetables. (every day)
- Walk. (every day)
- Take a laxative such as Senokot (8.6 mg). (1-2 times per day until your bowel movements return to normal)
Treat Mild-to-Moderate Constipation
- Dulcolax (10 mg) once daily until you have a successful bowel movement.
- MiraLAX powder (1 capful dissolved in 8 ounces of water) once daily until you have a bowel movement.
Treat Severe Constipation (3 Days without a Bowel Movement)
- An enema or rectal suppository one time.
When to Call your Neurosurgeon
Call your neurosurgeon or go to the emergency room if any of the following occur:
- clear or bloody drainage from your nose or ears
- headache gets worse
- seizure activity or jerking/twitching of face, arms, or legs
- ringing in ears
- neck is stiff or hurts to move
- weakness of your face, arms, or legs
- a fever higher than 100 degrees
- redness, swelling, odor, or drainage at your surgery site
- severe pain at your surgery site that is not controlled by your pain pills
- nausea or vomiting
- constipation lasting 3 days that is not helped by over-the-counter pills
The Tumor Board at Barrow Neurological Institute meets every Monday at noon. It provides a means for patients to benefit from the opinions and advice of expert doctors from different specialties who attend each week—doctors from your treatment team (neurosurgery, neuro-oncology, radiation oncology) and other experts, such as a neuropathologist (a doctor who examines the tumor under a microscope and makes the diagnosis), and a neuroradiologist (a doctor who reads the diagnostic scans).
Patient cases may be presented for a review of the tumor diagnosis or for discussion of the best treatment for the patient. Patient cases are typically presented after a new diagnosis, but also when they are at a critical point where input from the other experts would be helpful.
If you are in the hospital, your neurosurgeon or oncology team member will share tumor board plans with you during a personal visit on Monday afternoon or on Tuesday.
In most cases, you will also discuss the Tumor Board’s recommendations again at your next office visit.
Brain tumor diagnosis may also be referred to as brain tumor pathology. During your surgery, your neurosurgeon will send a tumor sample to the pathology lab. The sample will be examined by a neuropathologist, and a preliminary diagnosis will be determined while you are still in the operating room. This preliminary diagnosis is also referred to as a “frozen section” diagnosis. It will require more time for more testing before a final tumor diagnosis is made.
The final tumor diagnosis can take an average of 3 to 5 days from your surgery. For this reason, it is not uncommon to be discharged from the hospital before you receive information on your final tumor diagnosis. Your neurosurgeon or oncologist will discuss your tumor diagnosis at your postoperative office visit.
Tumors that start growing in the brain are primary brain tumors and generally will not travel to other parts of the body. Tumors that start elsewhere in the body and spread to the brain are metastatic brain tumors.
Treatment for a brain tumor depends on the type, size, and location of the tumor. Your age and overall health will also be considered in developing your personal treatment plan. Because a treatment plan is heavily determined by the specific tumor type, surgery is commonly recommended as the first line of treatment so that a tumor type (diagnosis) can be confirmed.
If the brain tumor is located in an area that can be safely reached in an operation, your neurosurgeon will work to remove as much of your brain tumor as possible. In some cases, tumors are small and easy to remove from nearby brain tissue, which makes complete removal possible. In other cases, tumors cannot be removed from the nearby tissue, or are next to sensitive areas in your brain, making surgery risky. In these cases your neurosurgeon may try to remove as much of the tumor as can be done safely. Even removing a part of the brain tumor may help reduce its symptoms. In some cases only a small piece (biopsy) is taken to confirm the diagnosis.
Surgery to remove a brain tumor carries risks, such as infection and bleeding. Other risks may depend on where the tumor is located in the brain. For example, surgery on a tumor near the part of the brain that controls movement may cause weakness after surgery.
Radiation therapy uses x-rays and other sources to kill tumor cells. Radiation therapy is delivered by a machine called a linear accelerator (external beam radiation), or, in very rare cases, by implanted “seeds” that release radiation after being placed inside your body close to the brain tumor (brachytherapy).
External beam radiation is given from outside the body and aims only at the area of your brain that contains the tumor. It can include your whole brain or just part of it, depending on the tumor type. Sometimes radiation is used after surgery to kill tumor cells that might have been left behind.
Radiation therapy is planned on an individual basis, depending on the tumor type.
Side effects of radiation therapy depend on the type and dose. In general, side effects are fatigue, patchy hair loss, and scalp redness and itching.
Radiation therapy is usually an outpatient procedure, so you can go home the same day.
Radiosurgery (Gamma Knife and CyberKnife)
Radiosurgery is not a traditional form of surgery. Instead, it uses multiple beams of radiation to deliver a highly focused form of radiation treatment to kill the tumor cells in a small area. Each beam of radiation is not particularly powerful alone, but where all the beams meet—the brain tumor—a very large dose is delivered, killing the tumor cells.
Radiosurgery is usually an outpatient procedure, as it is not invasive and requires no incision. Side effects may include fatigue, headache, and nausea. Patients usually go home the same day but may be admitted to the hospital for closer observation if necessary.
BNI offers two forms of stereotactic radiosurgery, Gamma Knife and CyberKnife. Each form is usually referred to by its specific name.
Depending on your tumor type, chemotherapy (“chemo”) may be recommended as part of your treatment plan. Chemo is medicine that kills tumor cells. It can be taken by mouth in pill form or injected into a vein. Chemo to treat brain tumors is ordered and managed by a neuro-oncologist. You will receive chemo in repeated patterns, called “cycles,” that allow your body to rest and build healthy cells between treatments. You may take chemo at the same time you receive radiation therapy.
Some tumor types are treated with a form of chemo that can be implanted directly onto the brain tumor site during surgery. After removing all or part of the tumor, your neurosurgeon may place one or more small disk-shaped wafers in the space left by the tumor. These wafers, also known as Gliadel wafers, slowly release the chemo over the next several days.
Targeted Drug Therapy
Targeted drug treatments focus on certain defects within tumor cells. By blocking these defects, targeted drug treatments can cause tumor cells to die. Many targeted therapies are still being studied in clinical trials.
One targeted drug therapy used at Barrow to treat brain tumors is called bevacizumab (Avastin). This drug is injected into the vein about every 14 days and may be ordered by your neuro-oncologist. It is given with chemo or alone as a part of your treatment.
Tumor Molecular Profiling
Molecular profiling is a way to test tumor cells to look for mutations (changes) in the tumor’s genetic makeup. These changes may help tailor treatment with chemo, targeted treatment, or clinical trial options. This is a promising area of brain tumor research to identify targets to treat in a tumor. Your oncology team and neurosurgeon can talk with you about the details of the testing when you are in their office.
Doctors, scientists, nurses, and coordinators at the Barrow Brain Tumor Research Center (BBTRC) carry out research studies in special research labs and also in clinical trials involving patients. Research studies help us to better understand how brain tumors grow and behave with certain treatments. Clinical trials help us to discover better ways to diagnose and treat patients with brain tumors. The main goal is to find a cure for brain tumors. We may offer you participation in a clinical trial as part of your treatment.
Standard Treatment versus Clinical Trials
Standard treatment is the best agreed upon treatment at the time of your surgery. Standard treatment changes over time as doctors learn from research, and the type of standard treatment depends on the kind of tumor you have.
Clinical trials test new drugs, equipment, and treatments that the US Food and Drug Administration (FDA) has not yet approved, and new surgery techniques. Clinical trials also may test a new drug with standard treatment that is already FDA approved. We may offer a clinical trial to people who have new tumors as well as to those whose tumor has returned. For the most up-to-date information on clinical trials being conducted around the country, please visit the clinical trials portal of the U.S. National Institutes of Health.
Many people find that talking with others in a similar situation can help with the stress. It can also provide useful insight and refreshing perspectives.
Southern Arizona Brain Tumor Support Group
This support group is open to people with brain tumors, their family members, and their friends. Group members have the chance to meet others with similar issues to discuss problems, ask questions, and learn new information about topics related to brain tumors.
University Medical Center
University Campus, Room 4978
1515 North Campbell Avenue, Tucson, Arizona
Date: Meets the 2nd Wednesday each month (10:30 AM to 12:00 PM)
Contact: Marsha Drozdoff, LCSW, ACSW at 520-694-4605 or [email protected]
Cancer Support Community Arizona (Formerly The Wellness Community of Arizona)
The Cancer Support Community provides a full range of support programs at no cost for people with cancer and their loved ones in a comfortable home-like setting. It offers drop-in and ongoing support groups led by professionals. It also offers networking groups for people with specific types of cancer, educational workshops, exercise activities, stress-management sessions, lectures by experts in the field of oncology, and social gatherings—all while helping people maintain a sense of humor, joy, and hope.
360 East Palm Lane
Phoenix, AZ 85004
Contact: Call (602) 712-1006
Provides lodging for adult cancer patients from out of state or outside the Phoenix area while they receive treatment in Phoenix. Patients and caregivers alike find comfort and support in one another.
336 East Willetta Street
Phoenix, AZ 85004
Contact: (602) 388-4920, or E-mail: [email protected]
Home health services for adult patients who are mainly homebound.
Program benefits include:
- Coordination of care
- Rehabilitation therapy and services
- Education and family caregiver support
- Community resource referrals
- Support from a nurse 24/7 by phone
1510 E. Flower Street
Phoenix, AZ 85014
Contact: Call (602) 212-3000
Gray Matters Foundation
The Gray Matters Foundation is dedicated to love, kindness, and the celebration of life. This foundation supports each patient as an individual.
Contact: Call Lanette Veres (623) 205-6446 or [email protected]
Brain Tumor Organizations
American Brain Tumor Association
This nonprofit association is dedicated to support, research, and education of patients and caregivers across the U.S. Educational material is available for free on their website.
National Brain Tumor Society
National Brain Tumor Society is the largest, most influential nonprofit that is fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. They drive a multifaceted approach to aggressively influence and fund strategic and collaborative research, and advocate for public policies in order to achieve the greatest impact, results and progress. Education material can be downloaded from their website free of charge.
The rest of this handbook is a 7-chapter booklet about brain tumors that contains valuable information for people with a newly diagnosed brain tumor, long-term brain tumor survivors, and family members. Various sections discuss emotional aspects of the diagnosis, fertility issues, financial concerns, long-term care planning, and much more. Frankly Speaking About Cancer: Brain Tumors is given to you on behalf of Barrow Neurological Institute, and reprinted with permission from the Cancer Support Community and the National Brain Tumor Society. We hope you will turn to this handbook time and again for helpful additional information.
We encourage you to find out all you can about your brain tumor. Write down your questions and bring them to your doctor visits. As you collect answers from your treatment team, take notes or ask a family member to come along with you on the visits. The more you and your family know and understand about each part of your care, the more confident you will feel when it comes time to make treatment decisions.