Research Awareness Support ABOUT BRAIN TUMOURS. Information for brain tumour patients. thebraintumourcharity.org

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1 Research Awareness Support ABOUT BRAIN TUMOURS Information for brain tumour patients thebraintumourcharity.org

2 Our Services The diagnosis of a brain tumour can be devastating. At The Brain Tumour Charity we understand this and the wide reaching impact on families and friends. We offer an inclusive Information and Support Service for everyone affected by a brain tumour - patients, family, friends, colleagues. Our services are free to use and complement the support offered by the NHS. We aim to provide information for everyone, starting at the point of diagnosis, and work closely with healthcare professionals to ensure that the highest quality services are provided. All our health and care-related information is accredited by The Information Standard, a scheme run by the NHS. This means it is information you can trust. We also offer a specialist Children and Families Service and Teenage and Young Adults Service, as well as comprehensive information on clinical trials. You can read more about our services on the Get Support section of our website or by getting in touch with our team. Information and Support Line (Free from landlines and most mobiles) support@thebraintumourcharity.org Live Chat (Available on the Understanding brain tumours and Get support pages of our website) Our closed Facebook groups are a great place to exchange knowledge and share personal experiences: bit.ly/fbsupportgroups thebraintumourcharity.org/get-support Phone lines and Live Chat open Monday - Friday, 9.00am pm 2

3 In this booklet What is a brain tumour?...4 How brain tumours are graded....5 Types of brain tumour....6 What causes brain tumours....9 The risk factors that we know about..10 How are brain tumours treated? The human brain..12 The Multi-Disciplinary Team...18 You can also download individual fact sheets in standard and clear print format from: thebraintumourcharity.org/about-brain -tumours These also include information on living with a brain tumour and fact sheets for parents. In this section of our website you will also find our handy A-Z jargon buster, which explains more words you may hear or read in relation to brain tumours. Information on treatments can be found on our website: thebraintumourcharity.org/treatment 3

4 What is a brain tumour? Our bodies are made of billions of cells. Normally, these cells reproduce and repair in a controlled way. If this process is disrupted, the cells can continue to grow, creating a lump of cells called a tumour. This section gives a brief outline of some of the most common types of brain tumour. If you have been diagnosed with a type of brain tumour not covered in this booklet, please contact our Information and Support Team. In this section: What is a brain tumour? How brain tumours are graded. An outline of some of the most common types of brain tumour. What causes brain tumours. An outline of how brain tumours are treated. 4

5 What is a brain tumour? A brain, or other Central Nervous System, tumour is an abnormal growth caused by cells dividing in an uncontrolled way. There are over 130 different types of brain and spinal tumour and they are usually named according to the types of cell they start to grow from and/or parts of the brain they grow in. A primary brain tumour begins somewhere in the brain - it has not spread from elsewhere in the body. A secondary brain tumour (known as a metastasis) has begun somewhere else in the body and has spread to the brain. Brain tumours are now generally referred to by health professionals according to their grade and genetic/molecular make-up rather than the terms you may have heard before - benign and malignant. This is because brain tumours may change grade over time. Grading Brain tumours are graded 1-4 according to their behaviour, such as the speed at which they are growing. Grade 1 and 2 tumours are low grade, slower growing and less likely to spread to other parts of the brain. There is also less chance of them returning if they can be got rid of completely by surgery or other types of treatment, such as radiotherapy or chemotherapy. They are sometimes still referred to as benign. This term is less used nowadays as it can be misleading. These low grade brain tumours can still be serious. A tumour of any grade can cause harm by pressing on and damaging nearby areas of the brain, nerves and blood vessels. They can also block the flow of the cerebrospinal fluid (CSF) that nourishes and protects the brain, causing a build-up of pressure on the brain. Grade 3 and 4 tumours are high grade and faster growing. They are more likely to spread to other parts of the brain (and rarely the spinal cord) and may come back, even if intensively treated. They may still be referred to as malignant. They often require other treatments e.g. radiotherapy and/or chemotherapy as well as surgery. Some tumours contain a mixture of cells with different grades. The tumour is graded according to the highest grade of cell it contains, even if the majority of it is low grade. How common is a brain tumour? Each year in the UK, approximately 11,000 people are diagnosed with a primary brain tumour. This represents fewer than two out of every 10,000 people in the UK. As such, brain tumours are classed as rare. Types of brain tumour There are many different types of brain tumour and their names can sound long and complicated. As a general rule though, tumours are named according to the type of cell they start from and/or where in the brain they are located. 5

6 They are then graded according to the way they look and behave under the microscope and the way the cells have mutated (changed). This may also contribute to their name. This section outlines some of the most common types. The following is not an exhaustive list. Please contact us for information on any other type. By cell type Glioma Gliomas are the most common type of brain tumour. A glioma is a tumour of the glial cells. Throughout the brain and spinal cord we all have nerve cells called neurons, which transmit messages (electrical and chemical signals). Surrounding our neurons are cells called glial cells. Glial cells support and protect the neurons by providing them with oxygen and nutrients and removing dead cells. Glial cells are much smaller than neurons and we have many more glial cells than neurons. There are different types of glial cells - the main types being astrocytes, oligodendrocytes and ependymal cells. As a result, gliomas can also be divided into different types. Types of glioma include: Astrocytoma (arising from astrocytes) Oligodendroglioma (arising from oligodendrocytes) Ependymoma (arising from ependymal cells) The term glioma may be used to describe any of these tumour types. It is not very specific, however, so the term astrocytoma, for example, gives a more detailed description of the cell the tumour grows from. Astrocytoma Astrocytomas are the most common type of glioma in adults (and children), accounting for 34% of all brain tumours. An astrocytoma can be low grade or high grade. Low grade astrocytomas may be referred to as pilocytic astrocytomas (grade 1) or diffuse astrocytomas (grade 2). High grade astrocytomas may be referred to as anaplastic astrocytomas (grade 3) or a grade 4 astrocytoma is referred to as a glioblastoma. Glioblastomas are the fastest growing brain tumour and the most common type of brain tumour in adults. (You may hear it referred to, less commonly, as glioblastoma multiforme or GBM). Oligodendroglioma This type of glioma develops from the oligodendrocytes, which produce the fatty, protective covering of the nerve cells in the brain (called myelin). Myelin helps nerve signals travel along the nerves more quickly. Oligodendrogliomas can be slow growing (grade 2), or they can be faster growing, when they are referred to as anaplastic oligodendroglioma (grade 3). They occur most often in the temporal or frontal lobes (see The human brain section of this booklet). 6

7 Oligodendrogliomas account for around 3% of all brain tumours and are most likely to be diagnosed in adults. Ependymoma This type of tumour develops from ependymal cells, which repair damage to nerve tissue and produce and aid the flow of the cerebrospinal fluid (CSF) and various chemical messengers. Ependymal cells are found in the fluid-filled areas of the brain. Ependymomas can be high grade or low grade, but the appearance of their cells under the microscope (which determines the grade) does not always fit with their behaviour. So the grade may not tell you how likely it is to grow or spread. They are less common - about 2% of all brain tumours. They occur more often in young adults (and children), where they can occur in any part of the brain. In older adults they usually occur in the lower part of the spinal cord. A tumour of these cells can rarely spread within the central nervous system (brain and spinal cord) via the CSF. Unspecified or mixed glioma It is possible to have what is known as a mixed or unspecified glioma. This is a tumour where the doctor cannot tell what type of cell the tumour has, or where the tumour contains more than one type of glial cell (astrocytes, ependymal cells and oligogodendrocytes). You will be given treatment for the highest grade of cell type within the tumour. These types of glioma together account for around 6% of brain tumours. However, the diagnosis of unspecified or mixed glioma is now less likely to happen, as we understand more about the molecular/genetic make-up of these tumours. In most cases, molecular testing can now show the specific type of tumour. Vestibular Schwannomas A schwannoma develops from the Schwann cells that cover the nerves and form the nerve sheath. They can occur on any nerve in the body, but are commonly found on the nerve that controls hearing and balance and which runs from the ear to the brain. These tumours are called a Vestibular Schwannoma or Acoustic Neuroma. Loss of hearing in one ear or problems with balance or dizziness are common symptoms of a Vestibular Schwannoma. Schwannomas are found most often in older people. They tend to be slow growing, low grade tumours and do not generally spread from the site that they begin to grow from. Rarely, they are associated with a genetic condition called neurofibromatosis type-2 (NF2), in which case they are usually diagnosed in much younger people. Embryonal tumours Embryonal tumours develop from cells that are left over from the earliest stages of our development, while we are still growing in our mother s womb as an embryo. Part of the embryo develops into the brain and spinal cord, but some cells do not develop and specialise the way other cells do and so they appear "primitive. 7

8 Normally these primitive cells are harmless within the body, but rarely they can develop into tumours. Embryonal tumours are more common in children and young adults. The most common of these childhood embryonal tumours is medulloblastoma. Medulloblastoma Medulloblastomas originate from poorly developed brain cells. The majority of them start in the cerebellum which controls balance and co-ordination (see The human brain section of this booklet). Medulloblastomas are high grade (grade 4) and fast growing. They can spread to other parts of the brain through the cerebrospinal fluid (CSF). They are the second most common of all brain tumours in children and the most common high grade tumour in children. They are also diagnosed in young adults. Germ cell tumours These grow from germ cells that form part of the embryo and develop into the reproductive system. Most occur outside the brain, but those that grow in the brain are usually close to the pituitary and pineal glands at the base of the brain. Their location means they can block the flow of fluid (CSF) around the brain and spinal cord. This causes headaches and sickness and as a result these tumours are often picked up early when they are still small. They also sometimes produce chemicals that can be picked up on blood tests (markers) and this can also help to diagnose these tumours quickly. 8 They represent around 1-2% of all brain tumours. About half of these occur in children and young adults (10-20 years old). Haemangioblastomas Haemangioblastomas are tumours that grow from blood vessel cells. They are low grade (grade 1), very slow growing and do not spread. However, they can grow in the brain stem, where they are very difficult to treat. They represent about 2% of brain tumours. People/families with a genetic condition called Von Hippel-Lindau Syndrome inherit a pre-disposition (proneness) to developing multiple haemangioblastomas. These can occur in the cerebellum, brain stem or spinal cord, as well as other areas, such as the kidneys (see The human brain section of this booklet). By location in the brain Meningioma A meningioma is a type of brain tumour that begins in the meninges. The meninges are a set of three membranes that cover and protect the brain and spinal cord. Meningiomas occur most often in the membranes covering the cerebral cortex or cerebellum (see The human brain section of this booklet). The majority of meningiomas are low grade. However, some meningiomas can still cause some harm. If they are close to large blood vessels, have grown into the surrounding brain tissue or disrupted the flow of CSF around the brain, they will need to be treated, and may be given a higher grade.

9 About one quarter (25%) of brain tumours in adults are meningiomas. They are more common in older adults and in women. Pituitary adenoma A pituitary adenoma is a tumour that develops from the tissue of the pituitary gland. The pituitary is a gland that is found towards the base of the brain. It controls other glands within the body that, in turn, control many of the body s functions. About 8% of tumours are in the pituitary gland. They are more common in older people and tend to be low grade, slow growing tumours that rarely spread. Some pituitary adenomas can cause unusual effects by producing too much of one of the pituitary hormones. The pituitary gland also sits very near to the optic nerves that control vision. Treatment will partly depend on whether the tumour is causing problems with vision and if it is producing hormones. CNS lymphoma A lymphoma is a tumour caused by the uncontrolled growth of the lymph cells - a type of white blood cell which helps the body fight infection. There are many different types of lymphoma - usually they form in the lymph nodes around the body. Rarely, a lymphoma can form in other places, such as the central nervous system (CNS), i.e. the brain and spinal cord. They can form either as a mass that presses on the brain/spinal cord from outside or, less commonly, as a mass or spread within the membranes around the brain (meninges). These lymphomas are called a primary cerebral lymphoma or a primary CNS lymphoma. They are usually high grade and are a type of non-hodgkin lymphoma called diffuse large B cell non-hodgkin lymphoma. (Hodgkin lymphoma is a different illness entirely). It is important for your doctors to tell you which type of lymphoma you have. CNS lymphomas represent just under 5% of brain and spinal cord tumours. They are usually treated differently to other brain tumours. What causes brain tumours? Very often, the answer is that we just do not know. This can be one of the most difficult things to accept and can leave you feeling helpless and frustrated. Brain tumours are nobody s fault. There has been much in the news about the possibility of mobile phones or power lines causing brain tumours, but research is inconclusive and, at present, there is no clear link between exposure to mobile phones/power lines and brain tumours. The risk factors that we know about Genetics According to Cancer Research UK, genetics (inheriting a gene or genes that make you more likely to get a brain tumour) are thought to account for around 5% of brain tumours. 9

10 The following factors may affect your risk of developing a brain tumour: If an immediate family member (parent or sibling) has a tumour of the central nervous system you may have a slightly higher chance of developing a brain tumour - the risk is still very low. If you have one of the following genetic conditions, your risk of developing a brain tumour is increased: Neuro-fibromatosis (NF) types 1 or 2 Li Fraumeni syndrome Von Hippel-Lindau syndrome Turner syndrome Radiation We know that radiation does increase the risk of a brain tumour developing. The risk of developing a meningioma or glioma is higher if you had radiotherapy to the head as a child, particularly before the age of five. Due to the known risk of learning difficulties, health professionals try to avoid giving radiation to the brain of a child under 3 years old. Radiotherapy is not given without very careful consideration and you will not be given radiotherapy unless the expected benefits outweigh any potential risks. How are brain tumours treated? Several factors influence the decision as to which treatment will best help you. A team of specialised health professionals will consider your individual diagnosis and 10 take account of factors, such as the size and location of the tumour, the type of tumour you have and how quickly it is growing. They will also consider your age and general health. You may hear this team being referred to as the Multi- Disciplinary Team or MDT. (See the MDT section later in this booklet.) Surgery will often be used to remove as much of the tumour as possible. As there is not much room in the skull for anything extra, the presence of a brain tumour can cause the pressure within the skull to increase. It is increased pressure that can cause some of the symptoms. Surgery may be performed if the location of the tumour is causing problems, such as disrupting the flow of CSF, causing the brain to swell (cerebral oedema) or compressing the nerves. However, surgery is not always possible or necessary. Sometimes, it would be too risky to operate as the tumour may be very close to, or wrapped around, an important part of the brain, such as the brain stem - the benefits of surgery would be outweighed by the dangers. In other cases, such as with very slow growing, low grade brain tumours, problems with increased pressure may not develop, so you may not need surgery straight away or even at all. Other treatments, such as radiotherapy and chemotherapy may be used - on their own, in combination or after surgery to try to remove any remaining tumour cells. Forms of radiotherapy are also considered if a person has many tumours, such as in Von Hippel-Landau Syndrome (described earlier in this booklet).

11 Specialist radiotherapy, such as cyber knife, may be used to treat a small number of brain tumours that cannot be reached by surgery. Another type of radiotherapy is Proton Beam Therapy (PBT). PBT is a type of radiotherapy that uses a beam of positively charged subatomic particles (protons) to target the tumour in a very precise way, reducing the harm to healthy tissue around the tumour. However, PBT is only suitable for a few types of brain tumour. It works best for smaller tumours and those where the edges are clearly defined. There is also some debate about whether it is any better than conventional well-targeted radiotherapy. It is not currently available in the UK for use in brain tumours, though it can be received outside the UK through the NHS where appropriate and in certain circumstances. The Department of Health has announced two Trusts in England that have been chosen to develop PBT centres - The Christie NHS Foundation Trust Hospital in Manchester and University College London Hospitals NHS Foundation Trust. There are also some private facilities being developed. Given the complex nature of the treatment and facilities, PBT won t be fully available in the UK until 2018 onwards. Until then, the NHS will continue to fund patients to receive treatment abroad. It is important to note that there are specific referral criteria for PBT and if you do not meet this criteria you will not be referred on the NHS. It is important to know that your medical team will tailor your treatment to provide the treatment that is the best for you. This could mean that you meet other patients who have the same tumour but who are receiving different treatments. The reasons for this could be due to several factors. If you are worried or concerned at all, you should speak to your medical team who will be able to help you understand the treatment decisions that have been made. For more information, visit thebraintumourcharity.org/treatment If you feel you are not getting the correct treatment you can ask for a second opinion. More information about this can be found on the Getting a Second Opinion page on our website, available at: thebraintumourcharity.org/about-braintumours. What effects can I expect to experience from a brain tumour? Some of the effects you experience will be a result of the brain tumour itself, whilst others will be due to the treatment you receive. For more information, see the Symptoms of a brain tumour in adults and the Treating Brain Tumours sections of our website, available at: thebraintumourcharity.org/about-braintumours 11

12 The human brain The human brain is the centre of our nervous system. It is the most complex organ in our body and is responsible for everything we do - every thought we have, action we take, memory we have and feeling we experience. In this section: A concise overview of some of the key parts of the brain and an outline of their functions. This section gives an overview of the brain and some of the key parts within it. 12

13 About the brain The brain is made up of around 100 billion nerve cells - each one is connected to another 10,000. This means that, in total, we have around 1,000 trillion connections in our brains. Our brains control the decisions we make, the way we learn, move, and how we feel. What makes the human brain unique is its size. Our brains have a larger cerebral cortex (see the Cerebral cortex information in this section). This enables abilities such as complex language, problem-solving and self-control. The brain is protected by the thick bones of our skull and a protective and nourishing fluid called cerebrospinal fluid (CSF). It is separated from the rest of the body s blood stream by the bloodbrain barrier, which also serves to protect the brain from harmful substances. Cerebral cortex (also called cerebrum or forebrain) The cerebral cortex is the outer layer of the cerebrum, which is the largest part of the brain. It is sometimes called the grey matter. It is split into two halves of roughly equal size called hemispheres. The two hemispheres, the left and right, are joined together by a bundle of nerve fibres called the corpus callosum. The right hemisphere controls the left side of the body and the left hemisphere controls the right side of the body. The cerebral cortex is further divided into four lobes: frontal, parietal, occipital, and temporal, which have different functions. Main areas of the brain 13

14 Frontal lobe The frontal lobe is the largest of the lobes and is located at the front of the brain. It has a huge role in what we do and who we are and controls our personality, memory, emotions, behaviour and movements. It helps us with planning and organising, problem-solving and decision-making, concentration, thinking through the consequences of our actions and understanding social norms. A tumour in the frontal lobe, therefore, can have multiple effects on thinking skills and include changes in mood and personality. It may also affect the senses of sight and smell. Lobes of the cerebral cortex and their functions. For a more detailed diagram, visit: thebraintumourcharity.org/the-brain Within the frontal lobe are two further specialised areas, whose functions may be affected by a tumour - the motor cortex and Broca s area. Motor cortex The motor cortex helps to control and co-ordinate how we make voluntary movements of our body. Broca s area Broca s area is responsible for producing language i.e. speaking fluently and with meaning. If this area is damaged, you may speak in halting, basic sentences or get your words muddled. Or you may have trouble turning your thoughts into spoken or written words. This can make talking to people very difficult. 14

15 Parietal lobe The parietal lobe sits directly behind the frontal lobe at the top of the brain. Within the parietal lobe is the specialised area known as the sensory cortex. Sensory cortex The sensory cortex receives information from our senses, such as touch, pain and pressure. It also helps us to respond to internal sensations, such as hunger. The parietal lobe uses the sensory information to give us spatial awareness i.e. recognition of the distance between two objects and where our body is in space, known as proprioception. This helps us when moving around. The parietal lobe also influences an area of the temporal lobe called Wernicke s area, which affects the understanding of language. A tumour in the parietal lobe, therefore, can impact on abilities such as finding your way around, writing, speaking and understanding speech. Temporal lobe The temporal lobe is located in the middle, lower half of the brain, right behind the temples. It is a complex part of the brain, which is involved in many of the more complex functions, such as memory, learning, understanding and controlling emotions and behaviour. The temporal lobe has a large role in auditory perception (hearing). Wernicke s area Sitting mainly in the temporal lobe, but next to the parietal lobe, is Wernicke s area. It is usually in the left hemisphere of the brain, but not always. This area is essential for understanding speech and written words. Damage to Wernicke s area, therefore, can result in problems with communication. A tumour in the temporal lobe, can also make it difficult to form new memories, to control our emotions and cause difficulties with speech and hearing. Occipital lobe The occipital lobe is the smallest of the four lobes, located towards the very rear of the skull. The primary role of the occipital lobe is the perception of vision. This means it makes sense of what your eyes are seeing, so you can understand it. A tumour in the occipital lobe, therefore, may cause problems with sight, including total vision loss (blindness) or partial vision loss, such as loss of peripheral vision (tunnel vision), blurred vision or small blind spots. Cerebellum The cerebellum, also known as the hindbrain, is the second largest structure of the brain. It sits at the very back of the skull and plays a key role in balance and co-ordination (which you may hear referred to as motor control functions). The cerebellum and the brain stem are in, or near, a small cavity (space) at the back of the skull called the posterior fossa. Health teams may use this term when referring to a tumour s location. 15

16 Brain stem The brain stem connects the cerebral cortex with the spinal cord. It controls many of the functions that we usually do not have to think about, including breathing, swallowing, blood pressure and digestion. The three main parts of the brain stem are the midbrain, the pons and the medulla oblongata. Midbrain The midbrain helps you to control and adjust your temperature. It also helps to control your sleep-wake cycle. This allows you to stay alert and concentrate in the day, then form a normal sleep pattern at night. Pons The pons links together different parts of the brain. It helps to relay information from the medulla oblongata to higher parts of the brain. Childhood brain tumours in the brain stem usually originate in the pons. 16 Medulla oblongata The medulla oblongata carries messages between the brain and the spinal cord. It is partly responsible for heart rate, lung functioning, and controls reflexes such as swallowing, coughing and the gag reflex. Spinal cord The spinal cord is made up of all the nerve fibres that pass from the brain down to the different parts of the body. It is filled with cerebrospinal fluid (CSF), which nourishes and protects it. It carries most of the sensory information that goes into and out of the brain. Meninges (see above image) The meninges is the collective term for the three thin layers of tissue separating the brain from the skull. They are called the dura mater (outermost), the arachnoid (middle) and pia mater (innermost). Their function is to protect the brain.

17 Pituitary gland The pituitary gland is a gland of the endocrine system. This means it is a hormone-producing gland. It is often referred to as the 'master' gland, as it controls several other hormone-producing glands, such as the ovaries, testes and adrenals. It is about the size of a pea and is not strictly part of the brain, but is found at the base of the brain close to part of the brain called the hypothalamus. It is made up of two main parts, the anterior (front) and the posterior (back), each of which releases hormones targeting different parts of the body. The pituitary gland works with the hypothalamus to control different functions of the body, such as heart rate, body temperature and the body s response to stress. It also regulates sex hormones, thyroid and adrenal function. Hypothalamus The hypothalamus is located near the pituitary gland at the base of the brain, just above the brain stem. It is an area of the brain whose main function is the control of hormones. This is done by linking the nervous system to the endocrine system via the pituitary gland. The hypothalamus regulates hormone levels by monitoring them - when a particular hormone drops to a level below where it should be, the hypothalamus signals to the pituitary gland that it should produce more. When the correct level is reached, the hypothalamus signals to the pituitary gland to stop. Together, the hypothalamus and pituitary gland control the activity of most of the body s other glands and so are involved in regulating functions, such as body temperature, growth, salt and water balance, sleep, weight and appetite. For more information: About the cells that make up the brain and how they grow, see the Brain Cells section of our website: thebraintumourcharity.org/brain-cells 17

18 Multi-Disciplinary Team for adults To ensure that you receive the best possible care, it is recommended that all patients are discussed and treated by dedicated specialists. This Multi-Disciplinary Team (MDT) will work together to create your individually tailored treatment plan. The MDT consists of a variety of specialists. This section contains an outline of the roles of some of the professionals who may be part of your MDT. In this section: An overview of the health professionals who would typically work with you as a brain tumour patient and a brief summary of what they do. An outline of some additional health professionals who may work with you following your diagnosis. You may not meet all these health professionals. 18

19 Although technically not part of the MDT, two types of healthcare professional may have been involved with assessing your first symptoms and referring you for more specialist help - your GP (family doctor) or an optometrist (at your opticians). They may also be involved in your care during treatment for a brain tumour. General Practitioner (GP) After considering your symptoms, if your GP suspects you may have a brain tumour, they will refer you to a more specialist health professional, such as a neurologist. Some GPs can refer you directly for a brain scan (see the Treating Brain Tumours section of our website). If you are diagnosed with a brain tumour, your GP will be kept informed of your treatment by the hospital. (If your GP does not think you have a brain tumour, but you are concerned that you might have, please raise this with them. Your GP can help you ask for a second opinion from another doctor.) Optometrist If you go for an eye test, the optometrist will look into the back of your eyes to see if there is any swelling of the optic disc - the area where the optic nerve enters the eye. Swelling of the optic disc can be a sign of raised pressure inside the skull (intracranial pressure). This can be caused by many things, not just brain tumours. If there are signs of swollen discs, your optometrist will send you to the hospital, usually within 24 hours, to be examined by a specialist eye doctor (ophthalmologist). If the ophthalmologist suspects a brain tumour, they may refer you to a neurologist or send you for a scan directly. If you are diagnosed with a tumour, the tumour or its treatment may affect your vision. Your optometrist may be able to provide you with glasses, visual aids and information about organisations that can help you adjust to changes in your vision. Neurologist A neurologist specialises in medical, non-surgical problems relating to the brain, spinal cord and nerves in the body. You may be referred to a neurologist for your initial diagnosis. The neurologist will check your general health and your nervous system (called a neurological examination). This involves looking at your vision, hearing, alertness, muscle strength, co-ordination and reflexes. They will also look at the back of your eyes to see if there is any swelling of the optic disc - a sign of raised pressure inside the skull, which could be a sign of a brain tumour. They may send you for a scan. Neurosurgeon Following a scan, if a tumour is suspected and your tumour can be operated on, you will be referred to a neurosurgeon. The neurosurgeon may be able to partially remove (debulk) or fully remove the tumour. A small piece of the tumour will be sent to a neuropathologist in the lab to be analysed and diagnosed. This is known as a biopsy. 19

20 If your tumour cannot be operated on to remove/debulk it, then the neurosurgeon may still perform a biopsy to help with an accurate diagnosis of the type of tumour. You can expect to see your neurosurgeon before and after surgery and for follow-up appointments in outpatient clinics. Neuropathologist A neuropathologist diagnoses diseases of the central nervous system (brain and spinal cord) by looking at a sample of brain tissue ( biopsy ) under a microscope and performing various molecular/genetic tests on it. The neuropathologist uses these to give a diagnosis of the type and grade of the brain tumour. This will affect the type of treatment that may be offered after surgery. Clinical Nurse Specialist (CNS) A clinical nurse specialist (sometimes called a neuro-oncology nurse) acts as a point of contact between you, your family and the rest of the MDT. For this reason, they are often called key workers. Your CNS will be able to help with any questions or concerns you may have about your treatment and can liaise with other members of the MDT on your behalf. Your CNS can offer specialist advice, information and support to you and your family from diagnosis onwards and refer you to other services if you need them, e.g. fatigue management, psychological issues, managing seizures, benefits. Neuro-oncologist/ Clinical oncologist In the UK, an oncologist is a healthcare professional who specialises in the nonsurgical management of patients who have tumours. They undergo training in the management of all types of tumour, but increasingly concentrate on treating two or three types. Non-surgical management of tumours involves radiotherapy, chemotherapy or both. There are different types of oncologists who you may hear of, or meet, as part of your treatment. They work closely with other members of the MDT to plan and co-ordinate your treatment. Clinical oncologists are the most common non-surgical speciality involved in treating brain tumours. They specialise in both radiotherapy and chemotherapy. (They are sometimes referred to as radiotherapists ). Medical oncologists specialise in chemotherapy only. Neuro-oncologists are oncologists who specialise in the non-surgical treatment of tumours of the brain and spinal cord. In the UK, most neuro-oncologists are also clinical oncologists. Neuroradiologist A neuroradiologist is a doctor who specialises in the use of imaging, such as X-rays and scans, to diagnose tumours of the brain and spine. It is a neuroradiologist who looks at and reports on your scans. 20

21 Radiographer Radiographers are not doctors but they are highly trained health professionals. There are two types of radiographer - diagnostic radiographer and therapeutic radiographer. The diagnostic radiographer uses a range of imaging technology to produce the images of the brain that are used to aid diagnosis by the neuroradiologist. The therapeutic radiographer is the person who actually administers the radiation treatment (radiotherapy). Therapeutic radiographers work with other professionals, including clinical oncologists and medical physicists, to help plan your treatment. Whilst you are receiving your radiotherapy you will see these radiographers daily. Medical physicist Although you are unlikely to meet the medical physicist, they play an important role in your treatment. Working with other health professionals in the team, they help plan the doses of radiation and work out how the treatment should be staged to give normal cells time to recover before the next dose. Additional staff who may work with you after treatment Occupational therapist Occupational therapists can help you by giving cognitive assessments and rehabilitation (help with your memory, language skills, problem-solving and attention if the tests show you need it), upper limb rehabilitation, fatigue management and anxiety management (including relaxation therapy) and help with work-related difficulties. They can also help you to manage daily activities, including dressing, cooking, eating and showering. They may suggest certain aids or equipment around the home to make jobs easier for you, such as a hand rail to help you in and out of the bath. Physiotherapist A physiotherapist helps with the recovery of your physical functioning through physical manipulation of the body and exercises. Patients with brain tumours are often referred to a physiotherapist because of difficulties with balance or muscle weakness caused by the tumour or its treatment. The physiotherapist may put together a programme for you that that includes exercises at home, the gym or in a hydrotherapy pool. Speech and language therapist You may be referred to a speech and language therapist if your tumour affects an area of the brain that is involved with language. Speech and language therapists can also help with difficulties relating to eating and swallowing, which can be an effect caused by the brain tumour. Dietitian A dietitian specialises in food and nutrition and can help create dietary plans to suit your individual nutritional needs, taking into consideration your medical records. 21

22 Neuropsychologist Neuropsychologists are concerned with the assessment and rehabilitation of people with traumatic brain injury, such as caused by brain tumours and their treatment. They use various tests, such as language assessments, personality tests, problem solving evaluations and other mental and behavioural examinations to help you deal with cognitive and behavioural changes caused by the physical damage to the brain. Clinical psychologist A clinical psychologist is concerned with reducing psychological and emotional distress and promoting psychological well-being. They help with difficulties such as anxiety, depression and relationship issues. They use a range of assessments and tests and can suggest counselling, therapy or advice to help you. Clinical psychiatrist A clinical psychiatrist is a medically qualified doctor who has chosen to specialise in psychiatry. They help with mental disorders and are able to prescribe medication and other treatments. 22

23 About this booklet The Brain Tumour Charity is proud to have been certified as a provider of high quality health and social care information by The Information Standard - an NHS standard that allows the public to identify reliable and trustworthy sources of information. This booklet has been written and edited by The Brain Tumour Charity s Information and Support Team, based on our individual fact sheets. The accuracy of medical information has been verified by leading health professionals specialising in neuro-oncology. Our fact sheets are produced with the assistance of patient and carer representatives and up-to-date, reliable sources of evidence. We hope that this will complement the medical advice you have already been given. Please do continue to talk to your medical team if you are worried about any medical issues. If you would like a list of references for this booklet, or any of our fact sheets, or would like more information about how we produce them, please contact us. What if I have further questions? If you require further information, any clarification of information, or wish to discuss any concerns, please contact our Information and Support Team: (Free from landlines and most mobiles: 3, O2, EE, Virgin and Vodafone) support@thebraintumourcharity.org Live Chat is available on the Understanding brain tumours and Get support pages of our website Join one (or more) of our closed Facebook groups: bit.ly/fbsupportgroups thebraintumourcharity.org/getsupport We welcome your comments on this booklet and pack. Please give us your feedback via our Information and Support Team on or support@thebraintumourcharity.org The Brain Tumour Charity, Version 3.0, September Review date: by September

24 About The Brain Tumour Charity The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families. We fund pioneering research to increase survival, raise awareness of the symptoms and effects of brain tumours and provide support for everyone affected to improve quality of life. We rely 100% on voluntary donations to fund our work. Donate today and help others like you Did you find this information useful? Would you like to help others in your situation access the facts they need? Every year, around 11,000 people are diagnosed with a brain tumour and we aim to provide an information pack to every single person at the point of diagnosis. Thanks to our generous supporters, we offer this information free of charge. There are many other ways to support us including fundraising, getting your company involved, leaving a donation in your Will or giving in memory. To find out more please visit: thebraintumourcharity.org/fundraising fundraising@thebraintumourcharity.org or call us on Get involved We wouldn t be able to make the progress we have without the incredible input we receive from you, our community. Whether it s supporting our research programmes, campaigning for change, reviewing our information materials or attending cheque presentations, everything you do helps to make a difference today and for tomorrow. To find out more about the ways you can get involved or to volunteer, please visit thebraintumourcharity.org/volunteering If you would like to help us continue this service, please consider making a donation. A gift of just 10 could fund two Information Packs, of which this booklet is a part, ensuring we can get them into the hands of people who need it. You can donate online at: thebraintumourcharity.org/donate or call us on

25 Your notes You can use these pages to make notes about your own diagnosis and Multi-Disciplinary Team members, including contact details. You could also write a list of questions to ask your medical team or our Information and Support Team. 25

26 Your notes 26

27 Your notes 27

28 Research Awareness Support thebraintumourcharity.org Live Chat Live Chat is available on the Understanding brain tumours and the Get support sections of our website, Monday-Friday, 9.00am-5.00pm Registered office: Hartshead House Victoria Road Farnborough Hampshire GU14 7PA Registered Charity no (England and Wales) SC (Scotland) Find us here too The Brain Tumour Charity. Version 3.0 Produced September 2017: Review date: by September 2020