A practical guide to living with and after cancer. Front Cover

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1 A practical guide to living with and after cancer Front Cover

2 2 Ask about your cancer treatment This leaflet aims to help you find out more about your cancer treatment. It suggests questions you can ask your healthcare team. There are questions to help you: understand your diagnosis understand what your treatment might involve understand the benefits and risks of different treatment options find out about practical and financial help. You may also find this leaflet useful if you want to support a partner, family member or friend who is having cancer treatment.

3 About this leaflet 3 How to use this leaflet You don t need to read the whole leaflet. Use the contents list on page 4 to find the sections that are helpful. Some questions may be more useful than others. This will depend on your treatment and your situation. You will see quotes from people affected by cancer and health professionals as you read this leaflet. Some names have been changed. If you find this leaflet helpful, you could pass it onto your family and friends. They may also want to ask questions about how they can support you. Getting more information You might have other questions, want more tips about talking to healthcare professionals, or just want to speak to someone. You can call the Macmillan Support Line free on , Monday Friday, 9am 8pm. If you re hard of hearing, you can use textphone , or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk If you have not been diagnosed with cancer but are worried about it, we can send you our leaflet Are you worried about cancer?

4 4 Ask about your cancer treatment Contents Five top tips for asking questions 6 Who can I ask? 8 Can you tell me more about 12 my diagnosis? What are my treatment options? 13 What will my treatment involve? 17 What practical and financial help 21 is available? What standards of care can I expect? 23 Further information and support 25 Your notes and questions 28

5 Ultimately what everybody wants is for you to be happy and comfortable with your treatment plan. David, GP

6 6 Ask about your cancer treatment Five top tips for asking questions 1. Plan your questions Appointments and other chances to speak with your healthcare team can be short. It s good to be prepared, and this leaflet will help you do that. As you read it, you could mark or tick the questions you want to ask. 2. Keep notes You can use the notes pages at the back of this leaflet to write down your questions. You can also use those pages to make notes during the appointment. This may help you to remember what is said. Some people find it useful having a separate notebook. You can use it to keep questions, and any answers and information you re given. You could order the Macmillan Organiser. It s a personal organiser that you can use to write notes about symptoms, appointment times and your medication. You can order a free copy by calling our support line, or by visiting be.macmillan.org.uk. If you have a smartphone, you can download our free My Organiser app. See your phone s app store for details or visit macmillan.org.uk/myorganiser Some healthcare professionals may be happy for you to record consultations, using a dictaphone or a smartphone. You should ask their permission first.

7 Five top tips for asking questions 7 3. Consider asking a relative or friend to join you You may find it helpful to bring a relative or friend to appointments. They may also be able to make notes while you and the healthcare professional talk. 4. Don t feel you have to ask everything at once You probably have lots of questions about treatment. But you may feel unsure about when to ask them. You don t have to ask all your questions at once. There will be other chances to speak to your healthcare team. It s fine if you think of new questions or need to ask a question again. You can make another appointment or speak to your healthcare team over the phone. Some healthcare professionals can also be contacted by . You may find it easier to your questions to them, if this is an option. 5. Remember that professionals are there to help You may have questions that feel difficult to talk about. For example, about how cancer and its treatment are affecting your sex life, or about symptoms you re experiencing. Remember that the healthcare professionals you speak to will be used to talking to people with all sorts of issues. They are there to help. It s very likely they ve helped other people in similar situations.

8 8 Ask about your cancer treatment Who can I ask? Your healthcare team Depending on the type of cancer you have and how it s treated, you may be seen by some or all of these healthcare professionals: Surgeon a doctor who specialises in surgery and does operations. Oncologist a doctor who specialises in the treatment of cancer. Haematologist a doctor who specialises in diagnosing and treating blood disorders, including cancers that start in the blood. Clinical nurse specialist a nurse who specialises in an area of health, such as a specific cancer type. Therapy radiographer an expert in planning and giving radiotherapy. Radiologist a specialist in x-rays and scans. Palliative care doctors and nurses specialists in relieving the symptoms of cancer when a cancer can no longer be cured. You may also be seen by other health or social care professionals. These could include a physiotherapist, dietitian, counsellor, psychologist or social worker. Your GP (family doctor) and practice nurse may also be involved in your treatment and care. Your treatment will be managed by a multidisciplinary team (MDT). An MDT is a group of professionals who work together to manage your treatment and care.

9 Who can I ask? 9 Which member of the healthcare team should I ask? You can ask the questions in this leaflet to any member of your healthcare team. If one person can t answer, they should be able to direct you to someone who can. You should be told about having a key worker. This is often your clinical nurse specialist. Your key worker is the person you can speak to as your main point of contact. They ll be able to answer your questions or tell you who can help. Their name and contact details should be on the first consultation record when you re told about having cancer. You may have questions about a particular cancer medicine, or about how medicines you are already taking would mix with your cancer treatment. You may be able to ask these questions to an oncology pharmacist. They can be contacted through the pharmacy department at your hospital or treatment centre. I act as a key worker, and there are no questions that you can t ask. Nothing is too big, too small or too silly - that s what we re here for. Michael, Clinical Nurse Specialist

10 10 Ask about your cancer treatment Financial specialists Some of the questions in this leaflet are about financial issues. It s common to have worries about money when you or someone in your family has cancer. From the cost of travelling to hospital, to higher energy bills if you stay at home more often, it can all add up. We have financial specialists who can help with personal finance issues or claiming benefits. You can call us on You could also speak to Citizens Advice for telephone or face-to-face advice (see page 26). Social services You may have questions about getting support at home. For example, you may need help: coping with any care needs you have with tasks like shopping or cleaning. If they think it s appropriate, your GP or a member of your healthcare team may refer you to social services for help with some of these issues. If you ve been referred to social services, you can ask them about any practical issues you have. They can also help with financial issues.

11 Who can I ask? 11 Other people affected by cancer You should ask your healthcare team questions about your condition and treatment. However, you may have questions you want to ask someone who is going through a similar experience to you. Here are two ways you could speak with other people affected by cancer: At a local support group visit macmillan.org. uk/in-your-area to search for one, or call us on and we can help you look for one. On our free online community visit macmillan.org.uk/community

12 12 Ask about your cancer treatment Can you tell me more about my diagnosis? Asking these questions could help you understand your diagnosis. We can send you more information about the type of cancer you have. About your diagnosis What exactly does my diagnosis mean? Where did the cancer start? How advanced is the cancer? What is a primary cancer? What is a secondary cancer? About the cancer What is the stage of the cancer? This means how advanced it is. What is the grade of the cancer? This gives an idea of how quickly it will develop. What is remission? What happens next What are the survival rates for this type of cancer, and what might this mean in my case? Who can I talk to about how I m feeling?

13 What are my treatment options? 13 What are my treatment options? There are different types of treatment for cancer. The main ones are surgery, chemotherapy, radiotherapy, hormonal therapy and targeted therapies. You may be given a choice of treatment options, which your specialist will discuss with you. You will need to give permission (consent) for the hospital staff to give you the treatment. If you don t understand what you ve been told, let the staff know so they can explain again. Finding out what your options are can help you make the right decision about your treatment. Your doctor or nurse will be able to guide you, but asking these questions may help you choose the cancer treatment that s best for you. You may find our booklet Making treatment decisions helpful. Call or visit be.macmillan.org.uk to order a free copy.

14 14 Ask about your cancer treatment Your treatment What treatment do you recommend for me? What is the aim of my treatment? Are there any other kinds of treatment that might work just as well? What are the benefits and risks of each treatment option? What might the side effects of each option be? Would there be different treatment options if I were treated privately? Choosing treatment You may be offered a choice of treatments, and asked to choose which you feel will be best for you. How can I make a choice between the treatments you have offered me? Can I change my mind after I ve started my treatment? Can I get a second opinion? Can you suggest a consultant who could offer a second opinion? Not having treatment Can I choose not to have any treatment? If I choose not to have treatment, what is likely to happen? If I choose not to have treatment, could I have treatment at a later stage? If I was able to have treatment later on, would the aim of the treatment be the same?

15 What are my treatment options? 15 Where to have your treatment Can I choose where I m treated? Can I be treated privately? Will I have all my treatment at this hospital or will I have to travel? How long will I need to stay in hospital for? Can I have my treatment at home, or closer to home? Is there any help or support that I can have at home? Taking part in a clinical trial You may want to ask about taking part in clinical trials. These are medical research trials involving patients. You don t have to take part in any trial that is offered to you. Our booklet Understanding cancer research trials (clinical trials) has more information. When you re discussing clinical trials, you may also want to ask some of the questions about the standard treatment on pages Is there a clinical trial I can take part in? What does taking part in a clinical trial mean? What sort of trial am I being offered? Why is the trial taking place? How does taking part in a trial change my treatment options?

16 Making the decision about treatment was so hard. My advice is to talk about it as much as you can. Trish

17 What will my treatment involve? 17 What will my treatment involve? Once you have discussed treatment options with your healthcare team, questions like these could help you understand your chosen treatment. Having treatment How soon will the treatment start? How long will the treatment last? What treatment will involve If I have chemotherapy, will I have tablets, injections and/or drips? If I need to take tablets at home, how should I handle and store these medicines? What will happen if I forget to take a dose? If I need radiotherapy, what will this involve? How often will I have my treatment? Can I have a family member or friend with me while I m having the treatment? If I need surgery, what will this involve? How long will I need to be in hospital for? How long is it likely to take for me to recover?

18 18 Ask about your cancer treatment How treatment might affect you What does this treatment do? Do I need to change my lifestyle while having this treatment? Can I drink alcohol? Do I need to change what I eat? Can I exercise regularly? Will the treatment affect my fertility or sex life? Can I continue working while I m having treatment? How well treatment is working How effective is my treatment likely to be? How will I know if the treatment has worked? How will the doctors know if the treatment is working? Will I need to have any more tests? If my treatment is delayed, will this make a difference? Make sure you understand everything you re told, and if not ask again. Christine

19 What will my treatment involve? 19 Side effects What are the possible side effects? How long are side effects likely to continue for? Will side effects eventually go away, or might some be permanent? How will I be monitored during treatment? What should I do if I have side effects? What can be done to reduce side effects and how can they be controlled? Are there any complementary therapies that might help? If I m having lots of side effects, can I reduce or completely stop my treatment? What would happen if I decided to stop my treatment at any point? During treatment Who will be looking after me while I have my treatment? Does my GP know about my diagnosis and treatment? Who should I contact with any problems? How long should I wait before contacting someone? Who should I contact in an emergency or out of hours? When will I next see my oncologist/ specialist nurse?

20 20 Ask about your cancer treatment Emotional support How can I get help with how I m feeling? Are there any support groups in my area? Is there any psychological support or counselling available? After treatment What happens when treatment finishes? How can I expect to feel after the treatment? What might the long-term effects of cancer and its treatment be? How will I be checked to see if the cancer has come back? Who do I contact if I have a problem in between follow up appointments? Worries about cancer coming back I m worried about the cancer coming back. Who can I speak to? How can I reduce the risk of the cancer coming back? How can I stay healthy after treatment finishes?

21 What practical and financial help is available? 21 What practical and financial help is available? These questions could help you to get any practical or financial help you need. Help with money worries Where can I get financial support? Will there be any financial costs to me? How do I get free prescriptions for my cancer treatment? Can I get help with my energy bills? Can I get help with travel or hospital parking costs? Work Will I be able to continue working? How much time will I need to take off work? Where can I get support with workrelated issues? Who can I speak to about going back to work once treatment finishes? If you re worried about finances, you may find our booklet Help with the cost of cancer useful. We also have a range of information about work for people with cancer, carers and employers. Visit macmilllan.org.uk/work

22 22 Ask about your cancer treatment Family What help is available for my family? Will I still be able to care for my children? Travel Can I still go on holiday? How can I find travel insurance providers that can cover me? You may find our booklets Travel and Cancer and Getting Travel insurance helpful. We also have a travel insurance blog at macmillan.org.uk/travelrecommendations Quote text Quote name

23 What standards of care can I expect? 23 What standards of care can I expect? There are national guidelines and standards for cancer treatment and care. They are mainly written for healthcare professionals so that the same level of care is given across the UK. You may also be interested in reading them, to learn more about what to expect. Your healthcare team might be able to show them to you, or you can find them online. Some of the guidelines and standards are different across the UK. England and Wales The 2011 Department of Health report Improving outcomes: a strategy for cancer looks at what good cancer treatment and care should involve. You can read the report at gov.uk The 2015 National Institute for Health and Care Excellence (NICE) document Suspected cancer: recognition and referral tells GPs when they should refer someone to a specialist if they have symptoms that could be cancer. There s also a version for the general public, which is online at nice.org.uk/guidance/ ng12/informationforpublic

24 24 Ask about your cancer treatment Scotland The 2008 Scottish Government report Better cancer care: an action plan set out guidelines and plans for improving cancer treatment. You can read it at scotland.gov.uk The Scottish Intercollegiate Guidelines Network (SIGN) also has guidelines about different cancer types and managing some conditions. Visit sign.ac.uk NHS Scotland and the Scottish Government wrote Scottish referral guidelines for suspected cancer. There is also a quick reference version. You can find both at scotland.gov.uk Northern Ireland Standards for treatment and care were set out in the 2011 Department of Health, Social Services and Public Safety report Service framework for cancer prevention, treatment and care. Read this at dhsspni.gov.uk As in England and Wales, the 2015 National Institute for Health and Care Excellence (NICE) document Suspected cancer: recognition and referral gives recommendations for GPs about referring someone to a specialist when they have symptoms that could be cancer. There s also a version for the general public, which you can read at nice.org.uk/guidance/ ng12/informationforpublic

25 Further information and support 25 Further information and support Cancer is the toughest fight most of us will ever face. But you don t have to go through it alone. The Macmillan team is with you every step of the way. Macmillan Cancer Support 89 Albert Embankment, London SE1 7UQ Tel (Mon Fri, 9am 8pm) Hard of hearing? Use textphone , or Text Relay. Macmillan Cancer Voices uk/cancervoices A UK-wide network that enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer. Non-English speaker? Interpreters are available. Alternatively, visit macmillan.org.uk To order any of our booklets, visit be.macmillan.org.uk or call us on

26 26 Ask about your cancer treatment Other useful organisations British Association for Counselling and Psychotherapy (BACP) BACP House, 5 St John s Business Park, Lutterworth, Leicestershire LE17 4HB Tel bacp@bacp.co.uk Promotes awareness of counselling and signposts people to appropriate services. You can search for a qualified counsellor at itsgoodtotalk.org.uk Cancer Research UK Angel Building, 407 St John Street, London EC1V 4AD Tel Has patient information on all types of cancer and has a clinical trials database. Citizens Advice Provides advice on a variety of issues including financial, legal, housing and employment issues. Find details for your local office in the phone book or on one of these websites: England and Wales org.uk Scotland Northern Ireland co.uk You can also find advice online in a range of languages at adviceguide.org.uk Gov.uk and NiDirect (England, Scotland and Wales) (Northern Ireland) Has comprehensive information about social security benefits and public services.

27 Further information and support 27 Health and Social Care in Northern Ireland The official gateway to health and social care services in Northern Ireland. Healthtalk org (site for young people) Has information about cancer, and videos and audio clips of people s experiences. NHS Choices The UK s biggest health information website. Has service information for England. Patient UK Provides people in the UK with information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health and illness related websites. My Cancer Treatment (England) www. mycancertreatment. nhs.uk Search for and compare NHS cancer services across England.

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30 30 Ask about your cancer treatment Disclaimer We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photographs are of models. Thanks This leaflet has been written, revised and edited by Macmillan Cancer Support s Cancer Information Development team. It has been approved by our Chief Medical Editor, Dr Tim Iveson, Macmillan Consultant Medical Oncologist. With thanks to: Jenny King, Chemotherapy Nurse Specialist, Sussex Cancer Centre; Pauline McCulloch, Colorectal Lead Nurse, Homerton University Hospital NHS Foundation Trust; Heather Nicklin, Macmillan Specialist Palliative Care Social Worker, Northern Lincolnshire and Goole NHS Foundation Trust; Jacky Turner, Macmillan Principal Pharmacist, Guys & St Thomas NHS Foundation Trust; and the people affected by cancer who reviewed this edition. Sources The sources used in this publication include: The Royal Marsden. Questions to ask. Available from: uk/cancer-information/treatment/you/pages/questions.aspx [Accessed 20 May 2015]. If you d like further information about the sources we used, please contact us at bookletfeedback@macmillan.org.uk

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32 More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don t have to go through it alone. The Macmillan team is with you every step of the way. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community there for you online, any time. The supporters who make it all possible. Together, we are all Macmillan Cancer Support. For cancer support every step of the way, call Macmillan on (Mon Fri, 9am 8pm) or visit macmillan.org.uk Hard of hearing? Use textphone , or Text Relay. Non-English speaker? Interpreters available. Braille and large print versions on request. Macmillan Cancer Support, August th edition. MAC Next planned review Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.

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