Treatment overview for primary bone cancer

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1 Treatment overview for primary bone cancer This information is an extract from the booklet Understanding primary bone cancer. You may find the full booklet helpful. We can send you a free copy see page 7. Contents Specialist treatment centres How treatment is planned The benefits and disadvantages of treatment Giving your consent Second opinion The treatments used for primary bone cancer are surgery, chemotherapy and radiotherapy. Most people need a combination of different treatments. Surgery is a very important part of treatment. It is used to remove the tumour in the bone. Chemotherapy is given to some people with primary bone cancer. Nearly everyone with a Ewing s sarcoma will have chemotherapy. It is also given to most people with osteosarcomas and spindle cell sarcomas. It s often given before surgery (called neoadjuvant chemotherapy). Giving chemotherapy before surgery helps to shrink the tumour, making it easier to remove. It can also be used after surgery (called adjuvant chemotherapy), when it s given to destroy any remaining cancer cells. Radiotherapy is used to treat some types of bone tumour. It is usually given after surgery or chemotherapy. It may also be used where surgery isn t possible. Radiotherapy is particularly effective in treating Ewing s sarcoma. It s less effective for osteosarcoma, chondrosarcoma and spindle cell sarcoma, so it isn t often used for these types of bone cancer. However, it can help in certain circumstances. Questions about cancer? Ask Macmillan Page 1 of 7

2 Specialist treatment centres Your treatment will usually be planned and given in a sarcoma treatment centre (sometimes called a sarcoma unit). This will either be one hospital or a group of hospitals that are close to each other and that work together. Sarcoma treatment centres specialise in treating people with primary bone tumours and soft tissue sarcomas. Primary bone cancer is rare and there are only a small number of sarcoma treatment centres in the UK. This means you may need to travel a long distance to reach one. Sometimes it s possible to have chemotherapy and radiotherapy treatments at a hospital closer to home. In this case, the treatments will be planned and given by a specialist cancer doctor (oncologist) who will work closely with the doctors at the sarcoma treatment centre. Teenage cancer units Some hospitals have teenage cancer units (sometimes called TYA units), which are specially designed for teenagers and young adults. Other hospitals may have special wards or areas for you if you re a teenager with cancer. There may be video games, DVDs and music to help you feel more at home. In a teenage cancer unit you may have access to a computer so that you can do some of your school or college work if you feel well enough. There may also be education specialists who can stay in touch with your school or college and support your learning needs while you re having treatment. Most teenage cancer units allow someone to stay with you. This is usually your parent or guardian but can also be a partner, friend or other family member, as long as they re over 16 and are well. In some hospitals there isn t a special ward for teenagers with cancer, so you are treated on an adult cancer ward. The staff on the adult cancer wards will still be able to look after you, although the wards may not have the same facilities as teenage cancer units. Page 2 of 7 Questions about cancer? Ask Macmillan

3 Children s cancer centres If your child has bone cancer, they will be treated in a hospital, or a part of a hospital, that specialises in diagnosing and treating children s cancers. These are often called principal treatment centres. These are relaxed and friendly places, and they aim to give you and your child a positive experience. You ll probably get to know the staff well. Almost all children s wards have facilities where parents can stay. The hospital will also have support staff, such as play therapists. Play therapists use play to help children cope with the experience of being ill. Children s cancer centres also have teachers, and most have education departments. The teachers at the hospital will contact the teaching staff at your child s school to make sure they can continue their education whenever they feel well enough. It s even possible for children to take exams in hospital if needed. If your child leaves hospital but isn t able to go back to school yet, tutoring can often be arranged with the local education authority. The person responsible for your child s schooling while they are in hospital will be able to organise this for you. How treatment is planned In most hospitals, a team of specialists will talk to you about the treatment they feel is best for your situation. This multidisciplinary team (MDT) will include: a surgeon (who specialises in bone cancers) a medical oncologist (a chemotherapy specialist) a clinical oncologist (a radiotherapy and chemotherapy specialist) a nurse specialist radiologists (who help analyse x-rays and scans) pathologists (who advise on the type and extent of the cancer) a paediatric oncologist (a doctor who specialises in treating children with cancer) if appropriate Questions about cancer? Ask Macmillan Page 3 of 7

4 a keyworker, who will be your main contact and will make sure you get help and support throughout your treatment this may be a specialist nurse or other healthcare professional, such as a physiotherapist. It may also include other healthcare professionals, such as a dietitian, physiotherapist, occupational therapist (OT), psychologist or counsellor. The MDT will take a number of factors into account when advising you on the best course of action, including your general health, the type and size of the tumour, and whether it has begun to spread. If two treatments are possible for your type and stage of bone cancer, your doctors may offer you a choice of treatments. Sometimes people find it hard to make a decision. If you re asked to make a choice, make sure you have enough information about the different options, what s involved and the possible side effects. This will help you decide on the right treatment for you. Many people with primary bone cancer will also be offered the opportunity to take part in a clinical research trial. These trials help doctors find new and better treatments for people with primary bone cancer. If your doctor thinks you are suitable for a clinical trial, they will discuss this with you. Remember to ask questions about any aspects of your treatment you don t understand or feel worried about. It may help to discuss the benefits and disadvantages of each option with your cancer specialist, keyworker or specialist nurse. You can also talk to our cancer support specialists on If you have any questions about your treatment, don t be afraid to ask your doctor or nurse. It often helps to make a list of questions and to take a relative or close friend with you to appointments. Page 4 of 7 Questions about cancer? Ask Macmillan

5 The benefits and disadvantages of treatment Many people are frightened by the idea of having cancer treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines. Treatment can be given for different reasons, and the potential benefits will vary depending on your individual situation. In people with early-stage bone cancer, treatment is often given with the aim of curing the cancer. You may also be given additional treatments to reduce the risk of it coming back. If the cancer is advanced and has spread to other parts of the body, treatment may only be able to control it, improving symptoms and quality of life. However, for some people in this situation the treatment will have no effect on the cancer, and they will get the side effects without any of the benefit. If you ve been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. However, if a cure is not possible and the purpose of treatment is to control the cancer for a period of time, it may be more difficult to decide whether to go ahead. Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you want to have treatment. If you choose not to have it, you can still be given supportive (palliative) care, with medicines to control any symptoms. Giving your consent Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. If you re the parent of a child under 16 who needs treatment for bone cancer, the doctor will ask you or your child to sign the consent form. The law about children consenting to treatment is very complicated, so make sure you discuss any concerns you have with the doctor. Questions about cancer? Ask Macmillan Page 5 of 7

6 No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about: the type and extent of the treatment its advantages and disadvantages any significant risks or side effects any other treatments that may be available. If you don t understand what you ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complicated, so it s not unusual to need repeated explanations. It s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. People sometimes feel that hospital staff are too busy to answer their questions, but it s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions. You can always ask for more time if you feel you can t make a decision when your treatment is first explained to you. You are also free to choose not to have the treatment. The staff can explain what may happen if you don t have it. It s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. Second opinion Your multidisciplinary team uses national treatment guidelines to decide on the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. Page 6 of 7 Questions about cancer? Ask Macmillan

7 If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so you can make sure your concerns are covered during the discussion. More information and support 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. To order a copy of Understanding primary bone cancer, visit be.macmillan.org.uk or call 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 thirdparty information or websites included or referred to in it. Macmillan Cancer Support Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ REVISED IN APRIL 2014 Planned review in 2016 Questions about cancer? Ask Macmillan Page 7 of 7

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