Secondary breast cancer in the brain Factsheet

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1 Secondary breast cancer in the brain Factsheet This factsheet is for anyone who has been diagnosed with secondary cancer in the brain that has spread from primary cancer in the breast. It describes what secondary breast cancer in the brain is, what the symptoms are and the treatments used.

2 2 Introduction Secondary breast cancer in the brain 3 Being told that your cancer has spread to the brain can be particularly distressing and one of the common concerns people have is not knowing what effects this will have on their life. We hope this factsheet answers some of your questions and helps you to discuss your options with your specialist team. We suggest you read this factsheet alongside our Secondary breast cancer resource pack. What is secondary breast cancer in the brain? Sometimes cells can break away from the original cancer in the breast and travel to the brain through the lymph or blood system. The cells that have spread to the brain are breast cancer cells. It is not the same as having cancer that starts in the brain. You may hear this type of spread described as advanced breast cancer, metastases, recurrence of the cancer, secondary tumours or secondaries. When breast cancer has spread to the brain, it can usually be treated although it cannot be cured. What symptoms might I have? Certain areas of the brain are responsible for different functions in the body, for example speech or movement. This means that your symptoms will depend on which area/s of the brain is/are affected by the secondary breast cancer. You may have some of the symptoms outlined below, but it is unlikely that you will experience all of them. One of the most common symptoms of secondary breast cancer in the brain is headache, which is often different from headaches you may have had before. It is generally worse when you wake in the morning and gradually lessens during the day. Over a period of time it may become noticeable through the day too. You may have other symptoms with it such as nausea, vomiting or fatigue. Cancer-related fatigue is one of the most common symptoms experienced by people with secondary cancer. Everyone knows what it feels like to be tired sometimes, but cancer-related fatigue can feel much more severe. It can come and go or be unrelenting, and this can be distressing and frustrating. It has many causes, from psychological factors such as the stress of coping with the diagnosis, to physical ones such as the side effects of treatment or progression of the cancer. Fatigue may have a significant impact on your ability to cope with your cancer and its treatment. It can also affect your everyday activities and have an adverse effect on your quality of life. Other possible symptoms include weakness or feeling numb down one side of the body, unsteadiness, seizures (fits) and double or wavy vision. Less common symptoms include changes in behaviour, confusion, memory problems and difficulty with speech. These symptoms can begin suddenly but more often they develop over time. As they get worse you will probably find that you feel more and more tired.

3 4 What investigations may I be offered? Secondary breast cancer in the brain 5 What investigations may I be offered? There are a number of investigations that you may be offered to confirm the diagnosis and provide your doctors with more information. Physical examination Your specialist will talk to you about your symptoms to get a picture of what has been happening to you. They may look in your eyes with an ophthalmoscope to see if there is swelling at the back of the eyes caused by pressure from the brain. They may check your arms and legs for changes in sensation, strength and changes in your reflexes, and look at your balance and how you are walking. CT scan (computerised tomography) This is a type of scan that uses x-rays to take a series of detailed pictures of the brain. It is painless but during the CT scan you have to lie still for around half an hour. Sometimes you will have dye injected in to a vein (usually in your arm) before you have the scan so that different areas of the brain can be seen more clearly. MRI scan (magnetic resonance imaging) This scan uses magnetism and radio waves to produce a series of cross sectional images of the inside of the brain. The scan is not painful, but it can last up to an hour. Biopsy In most cases your specialist will be able to tell if you have secondary breast cancer in the brain from your symptoms and scans. On rare occasions it is necessary to have a biopsy taken to confirm the diagnosis under the microscope. What treatment might I be offered? Treatment for secondary breast cancer in the brain aims to control the symptoms to improve your quality of life or slow down the growth of the cancer. You can talk to your specialist about different treatment options and how they may relieve your symptoms. You may be offered one or more of the following treatments. Steroids Steroid drugs are used to reduce the inflammation and pressure around the secondary breast cancer in the brain and can relieve symptoms you may have such as headache and nausea. They are sometimes prescribed before you have any investigations because they can begin to relieve your symptoms quickly. The steroids are given in high doses at first. The dose can usually be reduced once other treatments such as radiotherapy are given. Some of the more common side effects of steroids in high doses are indigestion (when taken on an empty stomach), thrush (candidiasis) in the mouth, increased appetite, weight gain, muscle weakness, sleeplessness (when taken later in the day) and mood swings. You should always take steroids with food and try to take them before the early evening. If you are concerned about any of these side effects, it may be helpful to discuss this with your palliative care nurse, specialist team or Macmillan nurse. Radiotherapy This is the most commonly used treatment for secondary breast cancer in the brain. It is usually given to the whole brain in daily doses over approximately five days (although this can vary). Tiredness is a common side effect of radiotherapy and it can be particularly noticeable when radiotherapy is given to the brain. Hair loss is another common side effect. Hair usually starts to grow back after the treatment has finished, although it may not

4 6 What treatment might I be offered? Secondary breast cancer in the brain 7 grow back completely. For more information see our Breast cancer and hair loss booklet. Stereotactic radiotherapy (also known as radiosurgery) Sometimes a very precise radiation treatment may be considered for people with one or two small secondary cancers in the brain and who have a good level of general health and fitness. This treatment allows high doses of radiation to be delivered with extreme accuracy over fewer visits. Stereotactic radiotherapy may also be referred to as Gamma Knife or CyberKnife which are the names of the radiotherapy machines used. It is a very specialist treatment that is not widely available. Your specialist team will be able to tell you if it may be suitable for you. Surgery Surgery is rarely possible for secondary breast cancer in the brain as there are usually a number of small cancers rather than a single area that could be removed or there are secondary cancers in other areas of the body. If surgery is an option, your specialist will consider the potential improvement to your quality of life alongside your general health and fitness. Hormone (endocrine) therapy Hormone therapies are used to treat cancers that are stimulated to grow by the female hormone oestrogen (known as oestrogen receptor positive or ER+). If you have previously had hormone therapy, your doctor may prescribe the same hormone therapy again or change it to a different drug. For more information about these treatments see our individual hormone therapy drug factsheets. Chemotherapy Chemotherapy is less commonly used to treat secondary breast cancer in the brain because the brain is surrounded by a protective membrane (called the blood brain barrier). This means that the chemotherapy may not be as effective because it is not able to reach the brain in large enough quantities. However, if chemotherapy is an option for you then your specialist team will discuss this. Targeted cancer therapies This group of drugs works by blocking specific ways that breast cancer cells divide and grow. The most well-known targeted therapy is trastuzumab (Herceptin) but the benefits of others for the treatment of secondary breast cancer in the brain are being looked at in clinical trials so it is likely more targeted therapies will become available in the future. Only people whose cancer has high levels of HER2 (HER2 positive), a protein that makes cancer cells grow, will benefit from having trastuzumab. For more information see our Trastuzumab (Herceptin) factsheet.

5 8 Driving Secondary breast cancer in the brain 9 Driving You are required by law to tell the Driver and Vehicle Licensing Agency (DVLA) about your secondary cancer in the brain. If you wish to continue driving, you will need to fill in a questionnaire. This gives the DVLA information about your medical condition. It also asks you to give your consent for DVLA medical advisers to request medical information from your doctor. When all the information has been gathered, the DVLA medical advisers will decide if a licence can be issued and for how long. You must not drive until you have DVLA approval as doing so will invalidate your car insurance. The DVLA s details are at the end of this factsheet. Coping with secondary breast cancer in the brain Facing a diagnosis of secondary breast cancer in the brain may be a very difficult time for you. You may experience emotions such as shock, sadness and fear that you may lose control and dignity. These emotions can be overwhelming and leave you feeling worried about the future. You may feel that you can cope with these emotions alone, or that you and the people close to you would benefit from some support. Macmillan nurses, hospice nurses and home care nurse specialists are experienced at supporting people through these difficult times. You can ask for a referral to be made through your GP or specialist hospital team if you are not already in contact with these healthcare professionals, and would like to be. You may also want to talk to your breast care nurse. They will be able to help you look at ways of coping and adapting both physically and psychologically to the diagnosis. A counsellor or psychotherapist may be more appropriate if you need further in-depth professional help to look at ways of coming to terms with your diagnosis. Again a referral can be made through either your GP or specialist hospital team. Your specialist team will be able to talk to you about the sources of support available in your area. Or you can call Breast Cancer Care s Helpline to find out information about our services or talk through any questions or concerns you may have. Further support Breast Cancer Care From diagnosis, throughout treatment and beyond, our services are here every step of the way. Here is an overview of all the services we offer to people living with and beyond breast cancer. Our free, confidential Helpline is here for anyone who has questions about breast cancer or breast health. Your call will be answered by one of our nurses or trained staff members with experience of breast cancer. If you find it difficult to talk about breast cancer, we can answer your questions by instead through the Ask the Nurse service on our website. Our website gives instant access to information when you need it. It s also home to our Discussion Forums, the largest online breast cancer community in the UK, where you can share your questions or concerns with other people in a similar situation. Through our professionally-hosted forums you can exchange tips on coping with the side effects of treatment, ask questions, share experiences and talk through concerns online. If you re feeling anxious or just need to hear from someone else who s been there, this is a way to gain support and reassurance from others in a similar situation We host weekly Live Chat sessions on our website offering you a private space to discuss your concerns with others getting instant responses to messages and talking about issues that are important to you. Our map of breast cancer services is an interactive tool, designed to help you find breast cancer services in your local area wherever you live in the UK. Visit Our One-to-One Support service can put you in touch with someone who knows what you re going through. Just tell us

6 10 Further support Secondary breast cancer in the brain 11 what you d like to talk about and we can find someone who s right for you. We run Moving Forward Information Sessions and Courses for people living with and beyond breast cancer. These cover a range of topics including adjusting and adapting after a breast cancer diagnosis, exercise and keeping well, and managing side effects. In addition, we run Lingerie Evenings where you can learn more about choosing a bra after surgery. Our HeadStrong service can help you prepare for the possibility of losing your hair during treatment find out how to look after your hair and scalp and make the most of alternatives to wigs. We offer specific, tailored support for younger women through our Younger Women s Forums, and for people with a secondary diagnosis through our Living with Secondary Breast Cancer events. Our free Information Resources for anyone affected by breast cancer include factsheets, booklets and DVDs. You can order all our publications from our website or by using an order form available from the Helpline. To request a free leaflet containing further information about our services for people with secondary breast cancer please contact your nearest centre (contact details at the back). Other organisations Cancer organisations Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ General enquiries: Helpline: Website: Textphone: or Text Relay Macmillan Cancer Support provides practical, medical, emotional and financial support to people living with cancer and their carers and families. It also funds expert health and social care professionals such as nurses, doctors and benefits advisers. Marie Curie Cancer Care 89 Albert Embankment London SE1 7TP Administration: Website: Marie Curie Cancer Care provides high quality nursing, totally free, to give terminally ill people the choice of dying at home supported by their families. Other organisations Driving and Vehicle Licensing Agency (DVLA) 2 Sandringham Park, Swansea Vale Llansamlet Swansea SA7 0AA Telephone: Website: Part of the Department of Transport. You can find out about contacting them with details of your diagnosis here: uk/dvla/medical/medical_drivers.aspx Goingfora Website: Website run by the Royal College of Radiologists. Has a virtual hospital where you can click on different staff members and machines to find out more information about visiting a radiology or oncology department.

7 12 Further support Publication title 13 Resources Notes National Institute of Health and Clinical Excellence NICE produce advice and guidance for the NHS about treating medical conditions such as breast cancer. They have produced guidelines on the treatment of advanced breast cancer and there is written and online information available. Understanding NICE Guidance; Advanced Breast Cancer: Information about NICE clinical guideline 81 (Feb 2009) for people who use NHS services.

8 14 Notes This factsheet can be downloaded from our website, It is also available in large print, Braille, audio CD or DAISY format on request by phoning This factsheet has been produced by Breast Cancer Care s clinical specialists and reviewed by healthcare professionals and people affected by breast cancer. If you would like a list of the sources we used to research this publication, or call Centres London and the South East of England Telephone Wales, South West and Central England Telephone East Midlands and the North of England Telephone Scotland and Northern Ireland Telephone We are able to provide our publications free of charge thanks to the generosity of our supporters. We would be grateful if you would consider making a donation today to help us continue to offer our free services to anyone who needs them. Please send your cheque/po/caf voucher to Breast Cancer Care, FREEPOST RRKZ-ARZY-YCKG, 5 13 Great Suffolk Street, London SE1 0NS Or to make a donation online using a credit or debit card, please visit All rights are reserved. No part of this publication may be reproduced, stored or transmitted, in any form or by any means, without the prior permission of the publishers.

9 Breast Cancer Care is here for anyone affected by breast cancer. We bring people together, provide information and support, and campaign for improved standards of care. We use our understanding of people s experience of breast cancer and our clinical expertise in everything we do. or call our free Helpline on (Text Relay 18001). Interpreters are available in any language. Calls may be monitored for training purposes. Confidentiality is maintained between callers and Breast Cancer Care. Central Office Breast Cancer Care 5 13 Great Suffolk Street London SE1 0NS Telephone Fax Breast Cancer Care, May 2012, BCC56 Edition 2, next planned review 2014 Registered charity in England and Wales ( ) Registered charity in Scotland (SC038104) Registered company in England ( )

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