FROM DISCOVERY TO RECOVERY A Guide for Adult Brain Tumor Patients & Caregivers Contents Diagnosis What is a brain tumor?...3 What is the difference be

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1 PENN NEUROSCIENCES FROM DISCOVERY TO RECOVERY A Guide for Adult Brain Tumor Patients & Caregivers Have you or a loved one been diagnosed with a brain tumor? If so, you likely have many questions about the diagnosis, treatment and the recovery process. This guide will help you understand your condition and describe what you need to know in order to make the right medical decisions. u Print this out and take with you on doctor visits

2 FROM DISCOVERY TO RECOVERY A Guide for Adult Brain Tumor Patients & Caregivers Contents Diagnosis What is a brain tumor?...3 What is the difference between a brain tumor and brain cancer?...3 What are the causes?...3 What are some common types?...4 What tests are performed to confirm diagnosis?...4 Treatment What are my treatment options?...5 What is the best type of treatment?...6 Who are the specialists involved in my treatment?...7 What should I look for in a hospital?...7 What about clinical trials?...8 What makes Penn unique?...8 Post-Surgery Recovery What are some medications that may be prescribed post-surgery?...9 Will I need physical medicine & rehabilitation?...9 What type of patient support is available at Penn?...10 Helpful Information Words You May Hear Your Physician Say...11 The Role of the Neuro-Oncology Nurse Navigator...11 The Role of a Caregiver...12 Questions That You or a Caregiver Should Ask Your Physician...13 Additional Resources for Brain Tumor Patients...13 Notes

3 Diagnosis What is a brain tumor? A brain tumor is a mass of cells that has grown uncontrollably in the brain. The growth takes up space within the skull and interferes with normal brain activity. This can increase pressure in the brain by shifting the brain or pushing it against the skull. The location of a brain tumor influences the type of symptoms that occur. Primary brain tumors originate in the brain, whereas secondary or metastatic tumors may have traveled to the brain via the blood or lymphatic system and deposited in the brain. In the United States, approximately 45,000 new cases of primary brain tumors are diagnosed each year. What is the difference between a brain tumor and brain cancer? Brain tumors may be benign (non-cancerous) or malignant (cancerous). Benign brain tumors are slow-growing and tend to have clearly defined borders. They are usually extra-axial (grow outside) or along the linings of the brain. These tumors can occasionally be watched over time with MRI or removed surgically if they have grown over time or causing symptoms. Malignant brain tumors grow rapidly and destroy normal brain tissue. Tumors that start in the brain (primary brain tumors) rarely spread to other areas of the body, but may return even after treatment. Malignant primary brain tumors (gliomas) are brain cancers and are determined by the abnormalities and the growth rate of the tumor cells. All brain tumors can cause clinical symptoms due to the size, location and the damage they can do to vital functions of the brain. Cancer from elsewhere in the body can metastasize to the brain and these brain cancers are called metastatic brain tumors. It is important to remember, though, that brain tumors are specific to each individual. Brain tumors have many different characteristics and growth patterns due to the molecular makeup of the individual person. Benign tumors can also be just as dangerous as malignant ones depending on the location. What are the causes? The cause of primary brain tumors is unknown. No risk factor accounting for the majority of brain tumors has been identified. There are many possible factors that could play a role, such as the environment and genetics. Some inherited conditions increase the risk of brain tumors. These conditions include neurofibromatosis and Von Hippel-Lindau syndrome. 3

4 What are some common types? There are more than 100 types of brain tumors as classified by the World Health Organization. Below are some of the more common types of brain tumors: Acoustic Neuorma: Also known as a schwannoma, vestibular schwannoma, or neurilemmoma, this type of tumor typically occurs in middle-aged adults. This is a benign tumor of the nerve sheeth and can often affect hearing. Astrocytoma: Tumors that arise from astrocytes cells that make up the supportive tissue of the brain. Oftentimes, terms describing the location of an astrcytoma may be attached to the name. Ependymoma: Tumors begin in the ependyma, cells that line the passageways in the brain where cerebrospinal fluid is produced and stored. Ependymomas are classified as either supratentorial (in the cerebral hemispheres) or infratentorial (in the back of the brain). Glioblastoma Multiforme (GBM): It is the most common and serious of malignant primary brain tumors in adults. Also known as glioma, this type of tumor is generally found in the cerebral hemispheres of the brain and grows quickly and aggressively. Medulloblastoma (MDL): Tumors located in the cerebellum, the part of the brain that controls balance and other complex motor functions. Meningioma: Typically a benign and slow-growing tumor that originates from the meninges, which are the protective membranes that surround the brain and spinal cord. Oligodendroglioma: Common among individuals in their 20s-40s, the tumor develops from glial cells called oligodendrocytes. Primary CNS Lymphoma (PCNSL): Tumors are most likely found in close proximity to the ventricles. This type of tumor is sometimes found in those with poor immune systems. What tests are performed to confirm diagnosis? At the Penn Brain Tumor Center, neuro specialists utilize the most advanced diagnostic tools to confirm the presence of a brain tumor and to find its location. These tools include: Advanced MRI techniques: Including magnetic resonance spectroscopy (metabolic scanning), perfusion MRI to determine tumor blood volume and diffusion tractography to visualize specific white matter tracts. Functional MRI: A functional MRI scan is performed while thinking about words or language. Areas of brain activation light up with increased blood flow and the location of these functions can be defined for surgical planning. High-resolution intraoperative MRI (3T): Neuronavigation for image-guided neurosurgery to identify the precise location of tumors in relation to surrounding brain fiber tracts. The surgeon develops a precise, personalized road-map of tumors in relation to key fiber tracts to achieve the goal of maximal safe resection. Genetic testing for brain tumors: Penn has established the Center for Personalized Diagnostics to define genetic mutations in all brain tumors. The genetic information allows clinicians to select the best, most personalized treatment for brain tumor patients. 4

5 Treatment What are my treatment options? In most cases, the first step in brain tumor treatment is for the neurosurgeon to remove as much of the tumor as is safe without affecting normal brain function. Once a tumor is identified, treatment options range from monitoring the tumor over a period of time, to surgical removal if radiological findings cause concern. Penn neurosurgeons provide personalized medical, surgical and therapeutic approaches to the treatment of benign and cancerous brain tumors. Options for the treatment of brain tumors include surgery, radiation and chemotherapy and are dependent upon the type and stage of the tumor and the patient s condition. If surgery is elected, the goal is for a maximal safe resection. In some cases, the entire tumor may not be removed and the residual will be watched over time with MRI and targeted therapy. The Penn Brain Tumor Center offers a range of advanced treatment options for targeting and destroying brain tumors. In making clinical decisions, the team provides best practices using the National Comprehensive Cancer Network (NCCN) guidelines. Furthermore, the center performs neuromonitoring during surgery to identify and preserve cranial nerves (affecting vision, hearing, balance, facial expressions, speech and swallowing), motor mapping (preserving strength) and language mapping (preserving speech). The medical, surgical and therapeutic approaches used to treat brain tumors at Penn Medicine include: Surgery: The treatment of choice for tumors that can be removed without causing major neurological problems. The goals of surgery are to:»»remove as much of the tumor as possible»»relieve pressure on the brain from the tumor»»determine the extent of the tumor»»provide access for other treatments, such as radiation implants»»provide tissue to establish a precise diagnosis For brain tumors, surgery may be done for different reasons:»»to remove as much of the tumor as possible»»to get a biopsy sample to determine the type of tumor»»to help prevent or treat possible complications from the tumor Craniotomy: Craniotomy is the most common procedure used to remove a tumor. The surgeons remove a piece of skull (bone flap) to visualize and access the brain. After resection the bone flap is replaced and secured with tiny plates and screws. A craniotomy may be utilized for many conditions including tumor resection, hematoma (blood clot) evacuation, aneurysm clipping or AVM (arteriovenous malformation). 5

6 Awake craniotomy: The techniques of awake craniotomy surgery permit Penn neurosurgeons to preserve functional tissue within the motor and speech cortex with greater reliability and better tumor resection than other forms of brain surgery. During awake craniotomy surgery, the patient is sedated while electrical stimuli are induced on the brain surface by the operating neurosurgeon. The patient is then wakened and his or her conscious reaction to this stimulation is used to tailor a motor and/or speech map of the brain. This map permits surgeons to maximize tumor removal while preserving functional tissue during surgery with minimal neurologic risk to the patient. Chemotherapy: Oral or intravenous medications that eliminate cancer cells. Chemotherapy is generally used as a secondary or adjuvant (modifies the effect of other agents) treatment for tumors that cannot be managed using only surgery. Chemotherapy is usually taken orally or by injection, and may be given alone or in combination with other treatments. Chemotherapy is given in cycles, which consist of on and off phases days of treatment followed by periods of time between treatments. Cycles vary depending on the drug or drugs used. Chemotherapy can also be delivered to the brain through polymer wafer implants. This is done by saturating biodegradable wafers with a chemotherapy drug, BCNU, and placing them directly inside the tumor cavity at the time of surgery. The wafers are left there to dissolve over a short period of time. In this way, a concentrated dose of BCNU (approximately 100 times higher than that tolerated through IV) can be delivered directly to the tumor site without increasing side effects. Proton therapy: A highly targeted form of radiation therapy that delivers precise doses of radiation to a tumor without affecting the surrounding normal tissues. Penn Medicine s Roberts Proton Therapy Center is one of the largest and most advanced facilities in the world for this precise form of radiation. Patients have access to this new treatment option, which is connected with the full range of oncology services at Penn s Abramson Cancer Center. Gamma Knife Perfexion non-invasive stereotactic radiosurgery: Used to treat gliomas and brain metastases, Gamma Knife radiosurgery is one of the most precise, powerful, and proven treatments for brain tumors. The treatment delivers more than 200 precise radiation beams that converge deep within the brain to shrink or even destroy diseased or damaged tissue. Alone, each of the beams contains harmless doses of radiation so surrounding tissue remains unaffected, protecting the important functions of the brain. Gamma Knife technology has a proven track record as an effective alternative to traditional brain surgery. CyberKnife stereotactic radiosurgery: A non-invasive alternative to surgery for treating cancerous and noncancerous tumors anywhere in the body. Like Gamma Knife Radiosurgery, CyberKnife damages the DNA in cancer cells to destroy their ability to multiply. Intensity-modulated radiation therapy (IMRT): X-rays or other high-energy rays are used to destroy cancer cells and shrink tumors. What is the best type of treatment? The standard treatments for brain tumors are surgery, radiation therapy, and/or chemotherapy. Once diagnosed with a brain tumor, your doctor will discuss the best options for treatment. This depends on several factors, including the type, location and size of the tumor as well as the patient s age and general health. Your treatment will be customized to your particular needs because each case is unique. 6

7 Who are the specialists involved in my treatment? The Penn Brain Tumor Center s highly skilled and experienced neurosurgeons have performed thousands of procedures. The team also includes neuro-oncologists, medical oncologists, radiation oncologists, neuroradiologists, pathologists, nurse practitioners, nurse navigators and nurses who specialize in the management of brain tumors. In addition, the Penn Brain Tumor Center team works with the Abramson Cancer Center to develop a Translational Center of Excellence to include scientists from the University of Pennsylvania who are advancing new approaches to brain tumor therapy. u Learn more about the team at Penn What should I look for in a hospital? There is no best hospital or doctor, but there are factors to consider when choosing the hospital that is best for you. Be sure that you are comfortable with all that will be involved in your treatment. Communication is key to a good relationship with your doctors. Some things to consider when choosing a hospital: What types of specialists are available to you? Most large hospitals have a multi-disciplinary treatment team, made up of various specialists. The Penn Brain Tumor Center consists of neurosurgeons, neuro-oncologists, radiation oncologists, neuroradiologists, pathologists and nurses who specialize in the management of brain tumors. Penn also has a dedicated neuro-oncology nurse navigator who will help coordinate care. Learn more about the nurse navigator on page 11. How many patients has the medical center diagnosed and treated? The Penn Brain Tumor Center s highly skilled and experienced neurosurgeons have performed thousands of procedures. Does the hospital participate in clinical trials? Penn participates in a number of breakthrough clinical trials that can help improve the quality of life for those with neurological disorders. Learn more on page 12. What kind of support services are available? Learn more about Penn support services for brain tumor patients and caregivers on page 10. u For information on Penn Brain Tumor Center locations, visit the Penn Neurosurgery website. 7

8 What about clinical trials? A clinical trial is an organized program designed to determine the safety and effectiveness of a new therapy (drug or device). Penn Medicine is the Philadelphia region s only participant in the NCI-funded Adult Brain Tumor Consortium which allows it access to the latest clinical trials and therapies not offered anywhere else in the region. These include clinical trials using novel chemotherapies, biologic response modifiers, genetic based therapies, anti-tumor vaccines and other immunotherapies. Penn s Neurosurgery Clinical Research Division (NCRD) is dedicated to the development of research protocols that focus on the neurosurgical interventions for diseases of the central nervous system The NCRD is committed to conducting clinical research that protects the rights of human subjects through adherence to the standard operating procedures for good clinical practice established at the University of Pennsylvania to ensure the institutional culture of research excellence. u View Active Clinical Trials What makes Penn unique? Penn Medicine prides itself in revolutionizing the health care industry by leading research studies and paving the way to new treatments and breakthroughs. Having performed its first successful craniotomy for a brain tumor in 1887, Penn Medicine s neurosurgery program is considered one of the first in the country to translate state-of-the-art research into improved patient care. Penn Neurosurgery provides comprehensive surgical management of disorders of the brain, spinal cord and peripheral nervous system. The same is true for the Penn Brain Tumor Center, a nationally recognized program for innovative, cutting-edge therapy of benign and malignant tumors originating in the brain, as well as metastatic tumors that originate outside of the brain. With nationally renowned surgeons and a highly qualified staff, the Penn Brain Tumor Center has successfully treated thousands of patients afflicted with tumors in the brain. The depth and breadth of the Penn Neurosurgery program and the experience of Penn s neurosurgeons is unmatched in the greater Philadelphia region. The department s renowned physicians, programs and services are recognized, both, regionally and throughout the nation. 8

9 Post-Surgery Recovery What are some medications that may be prescribed post-surgery? Your neurosurgeon may ask you to take medications after your surgery including:»»corticosteroids, such as dexamethasone, to reduce brain swelling»»anticonvulsants, such as evetiracetam (Keppra), to reduce seizures»»steroids may be prescribed to help reduce brain swelling»»a stomach protective agent if you have been placed on steroids»»you may also need medications to manage nausea, stomach acids, pain and the replacement of hormones Will I need physical medicine & rehabilitation? Due to the fact that brain tumors can develop in parts of the brain that control motor skills, speech, vision and thinking, it is possible that you will need some form of rehabilitation as part of your recovery. Such services may include:»»physical therapy»»speech therapy»»occupational therapy, which can help you get back to doing normal activities Good Shepherd Penn Partners, which is the official inpatient and outpatient therapy provider of Penn Medicine, is a multi-disciplinary rehabilitation team. This group consists of neurosurgeons, physiatrists, physical therapists, occupational therapists and speech pathologists whose goal is to create a comprehensive and individualized treatment and recovery plan. The objective is to help enhance the quality of your life after surgery by helping you to achieve the skills necessary to perform daily activities. These services are provided at a variety of locations at Penn Therapy & Fitness from Good Shepherd Penn Partners. Good Shepherd Penn Partners is accredited by The Joint Commission, a symbol of quality and the organization s commitment to meeting standards for safety and value. 9

10 Post-Surgery Recovery What type of patient support is available at Penn? It is not uncommon for patients recovering from a brain tumor (and their family members) to experience feelings, such as sadness, anger, fear, loneliness, or helplessness. These feelings are normal, and talking with others can be extremely helpful. At Penn Medicine, functional and emotional recovery is as important as physical recovery. A variety of support services are available to patients at the Penn Brain Tumor Center: Brain Tumor Support Group: Patients and their families share experiences while gaining support and knowledge. Counseling: A full-time social worker supports and assists patients with brain tumors and their families. At-home Services: Patients are able to maintain independence while receiving a variety of clinical and support services at home. Nurse Navigator: A dedicated neuro-oncology nurse navigator helps patients and caregivers coordinate appointments, answers questions and assists in finding clinical trials. Learn more about the nurse navigator role on page 11. u To learn more, talk to your provider or visit the Penn Neurosurgery website. 10

11 Helpful Information Words You May Hear Your Physician Say Benign: Slow-growing tumor that rarely spreads. Biopsy: During a surgical procedure, a small sample of a tumor is taken for diagnosis. This is how the grade and type of tumor is determined. Grade: The degree of aggressiveness of a tumor. It can range from 1 (lowest) to 4 (highest). Intracranial pressure: Pressure within the brain. Malignant: Fast-growing, invasive tumor. Necrosis: A form of cell injury that results in the premature death of cells in living tissue. Nervous system: The brain and spinal cord, and the nerves branching from them. Coordinates voluntary and involuntary actions and transmits signals between different parts of its body.»»to learn more, talk to your provider or visit the Penn Neurosurgery website. 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 minimally invasive surgery which helps to locate specific sites in the brain. The Role of the Neuro-Oncology Nurse Navigator Receiving a brain tumor diagnosis can be an overwhelming time for patients and their families. With the possibility of surgery, chemotherapy or radiation therapy, patients often face uncertainty about how this diagnosis will impact their future. Often, patients and their families are looking for answers and help in navigating this process. That s where Penn s neuro-oncology nurse navigator can help. The nurse navigator works directly with providers, specialists and medical staff who are a part of the care team and is also available anytime throughout a patient s care. Nurse navigators can often be the primary point of contact between a patient and family and the health system. Penn s neuro-oncology nurse navigator can help patients with:»»explaining the various members of the care team»»coordinating appointments with multiple specialists»»communicating with providers»»answering questions about what to expect or the care plan that has been reviewed»»helping prepare for appointments or upcoming treatments»»referring patients and families to supportive resources, including social work, physical therapy, nutrition, counseling, and support groups»»providing general support to patients and families»»answering questions about clinical trials»»helping facilitate second opinions at Penn u If you or a loved one is being treated for a brain tumor at Penn and would like to speak with our neuro-oncology nurse navigator, please call Eleanor Miller, MSN, RN, OCN at

12 The Role of a Caregiver For those diagnosed with a brain tumor, an important part of the care team is often the caregiver. A caregiver, especially for patients who are undergoing several neuroliogical symptoms due to their diagnosis, often takes on several roles and may require support of their own. You may find that being a caregiver feels like a full time job, as you play financial manager, medical research, patient advocate, communicator and support system. At Penn, we value the role of a caregiver and provide access to helpful and supportive resources. u Tips to keep in mind: Do your research. Upon receiving a brain tumor diagnosis, most patients and caregivers naturally begin to research options: What does this diagnosis mean? What are treatment options? Where is the best place to go for brain tumor treatments? Once you find a medical facility that you re happy with, begin researching support services and therapies, such as nutrition counseling during treatment and support groups. Prioritize tasks. As a caregiver, you may feel responsible for everything, from cleaning the house to making doctor s appointments. Prioritize these tasks and look at what is most urgent for your loved one. For example, having a plan in case of an emergency is more urgent than making sure the house is clean. Look for smaller tasks that you are able to hand off to a trusted friend or family member. Advocate for your loved one. Brain tumor care is complex. One of the best ways you can help your loved one is by being their advocate. Learn each member of the patient s care team, make sure the patient understands all of their choices and resources available, ensure that the patient s questions are being asked and answered, and continue to do research when necessary. You may also be faced with discussing this difficult diagnosis on behalf of the patient with friends and family. Get organized. Most caregivers find it helpful to create a master calendar, full of appointments, support group meetings, and other activities and events, that can be shared among family and friends. Recordkeeping is also an important task when caring for a patient with a brain tumor. Find a place to keep track of tests, insurance information, medications, treatments, symptoms and side effects. Provide a safe environment. Cognitive and physical changes of a brain tumor patient may require you to make adjustments to your home in order to provide the safest environment possible. Work with a specialist on the care team who will help you determine those adjustments, based on both of your sizes, your strength, and your levels of ability. The care team will also help you learn how to transfer the patient, if they require that level of care, and when to know if an injury or fall needs to be elevated to emergency care. Take care of yourself. When caring for a loved one it can sometimes be easy to put your own needs second. However, it s important that you ask for help and seek support when you are feeling overwhelmed. Look for caregiver support groups and speak with your loved one s care team about resources for caregivers. Don t be afraid to ask for help it will benefit you, as well as the patient. See page 13 for questions that patients and/or caregivers should ask the care team. 12

13 Questions That You or a Caregiver Should Ask Your Physician:»»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 expected benefits of each kind of treatment?»»what are the risks and possible side effects of each treatment? How can side effects be managed?»»how will treatment affect my normal activities? What is the chance that I will have to learn how to walk, speak, read or write after treatment?»»how often should I have checkups?»»would a research study (clinical trial) be appropriate for me?»»what support services are available for patients and for caregivers?»»is there a dedicated nurse navigator who can guide us through our care?»»what can I do to prepare for treatment?»»what medical tests and procedures are needed? Will I need to stay in the hospital? If so, for how long?»»what is the contact information for members of my medical team?»»how do we handle medical emergencies? Additional Resources for Brain Tumor Patients:»»American Brain Tumor Association, Brain Tumor Foundation, Cancer Center of the University of Pennsylvania, Cancer Society (ACS), Cancer Institute, 13

14 Notes The name of my tumor type is: Where is my brain tumor? My nurse s name is: My nurse s phone number is: When is my next appointment? With whom? Medications I am currently taking: Additional Notes: 14