Understanding bone sarcoma sarcoma.org.uk 1 About this Contents booklet This booklet is aimed at anyone We offer information, support What is bone sarcoma? 4 who has been diagnosed with a and a signposting service Signs and symptoms 5 bone sarcoma. to other organisations that can help. How is bone sarcoma diagnosed? 6 It explains what bone sarcoma is, how it is diagnosed and the Treatment may vary depending What tests or scans might I have? 7 treatment options available on which nation of the UK you Understanding my diagnosis 8 to you. live in. Please ask your doctor or sarcoma clinical nurse specialist It also has information on Who will treat me? 10 about the treatment options where you can go for support. What treatment is available? 11 available in your area. It is your personal guide with – Chondrosarcoma space available to keep all your diagnosis information and the – Osteosarcoma details of your next hospital – Ewing’s sarcoma appointments. – Chordoma You can also include contact What happens after I have had my treatment? 20 details of your doctor, sarcoma clinical nurse specialist or other Will my cancer come back? 21 health professionals. What if my cancer spreads? 21 You may find it useful to What support is available? 22 share the information in this booklet with your partner My diagnosis details 26 or family members to help My sarcoma multi-disciplinary team (MDT) 27 them understand about bone sarcoma. If you have questions about anything you read in this booklet please contact Sarcoma UK. 2 3 means bone. Ewing’s sarcoma can also start in subcutaneous tissue, this means beneath What is bone the skin. • Chordoma sarcoma? Chordoma makes up only 6% of all bone sarcoma diagnoses and most commonly Bone sarcoma is a cancer that starts in the bone. affects adults in their 40’s and 50’s. The Sometimes a bone sarcoma is called a primary majority of chordomas (50%) arise in the What are bone cancer. It is extremely rare and makes up sacrum (the bottom of the spine); however, the different only 0.2% of all cancer diagnoses in England. 30% arise at the base of the skull and the types of bone remaining 20% arise in other locations in sarcoma? There are on average, 500 diagnoses in the UK the spine. each year. Bone sarcoma can affect any bone in the body but the most common area it affects is the legs. The four most common types of bone Signs and sarcoma are: • Chondrosarcoma Chondrosarcoma develops in the cartilage symptoms cells. It mostly affects adults above the age of 40 and the most common sites are the Symptoms of bone sarcoma can vary depending “Symptoms upper arm, pelvis and thigh bone. They make on the size and location of your tumour. can sometimes up 37% of all bone sarcoma diagnoses be confused The most common signs are: with more • Osteosarcoma • Bone pain, particularly occurring at night common Osteosarcoma is mostly diagnosed in teenagers problems such and young people; however, it can also affect • A mass or swelling as a sports older adults. It mostly affects the knee, thigh • Restricted movement in a joint injury or in bone, shin bone or upper arm. They make up children and 30% of all bone sarcoma diagnoses Symptoms can sometimes be confused with young people, more common problems such as a sports injury • Ewing’s sarcoma growing pains.” or in children and young people, growing pains. Ewing’s sarcoma makes up 14% of all bone sarcoma diagnoses. It most commonly affects teenagers and young adults with the pelvis, thigh bone and shin bone being the most commonly affected areas. In rare cases, Ewing’s sarcoma can develop in the soft tissue around the bone, this is called soft tissue sarcoma. It is sometimes called extraosseous sarcoma – extra means outside, osseous 4 5 How is bone What tests or sarcoma scans might diagnosed? I have? A diagnosis of bone sarcoma usually starts with X-ray a visit to your GP who will refer you for an x-ray. Uses x-radiation to take images of dense tissues What does a If a bone sarcoma is suspected following the results inside the body such as bones or tumours. bone sarcoma of the x-ray your GP will refer you to a specialist CT diagnosis bone sarcoma centre. The Computer Tomography (CT) scan takes involve? Your symptoms will then be investigated further by a number of x-rays to make a 3D image of an a specialist doctor using a series of tests that may affected area. identify sarcoma. PET The Positron Emission Tomography (PET) scan Tests may include: “PET scans shows up changes in tissues that use glucose as shows up • Physical examination their main source of energy – for example, the brain changes in or heart muscle. It involves an injection of a very tissues that • A scan – taking pictures of inside the small amount of a radioactive drug into the body. body using x-ray, CT, PET or MRI use glucose The drug travels to places where glucose is used as their • A biopsy – taking and testing a tissue for energy and shows up cancers because they use main source sample glucose in a different way from normal tissue. of energy.” MRI Magnetic Resonance Imaging (MRI) uses magnets to create an image of the tissues of the body. Bone scan Uses radioactive chemicals called radionuclides which are injected, swallowed or breathed into the body, to take images of bones. Histopathology Examination of a tissue by a pathologist under a microscope to identify disease. Blood test Laboratory analysis of a blood sample. 6 7 Understanding “Identifying the stage and grade of a cancer means your diagnosis your doctor can advise A diagnosis of bone sarcoma should be confirmed on the best course of by a specialist sarcoma pathologist who will What is the identify the type of sarcoma and the stage and treatment for you.“ stage and grade of the tumour. Identifying the stage and grade of my grade of a cancer means your doctor can advise bone sarcoma? on the best course of treatment for you. It also describes the cancer in a common language which 1b. The cancer is low-grade and has grown is useful when your doctor is discussing your case through the bone wall. with other doctors or health professionals. Stage 2 The stage of a cancer is measured by how much The cancer is high-grade and has spread it has grown or spread which can be seen on the beyond the bone. results of your tests and scans. The results from a biopsy can tell the grade of the cancer. Stage 2 is further divided into: 2a. The cancer is high-grade and is still Grading completely in the bone it started in. “The stage of 2b. The cancer is high-grade and has grown Low-grade means that the cancer cells are a cancer is outside the bone wall. slow-growing and look quite similar to normal measured by cells. They are less aggressive and less likely how much it Stage 3 to spread. has grown or The cancer may be any grade and has spread spread ” High-grade means the cancer cells are fast to another part of the body, such as the lungs. growing and look very abnormal. They are more aggressive and more likely to spread. Staging Stage 1 The cancer is low-grade and has not grown outside the bone. Stage 1 is further divided into: 1a. The cancer is low-grade and is still completely within the bone it started in. 8 9 Who will What treatment treat me? is available? The National Institute for Health and Care The treatment you will receive depends on the Excellence (NICE) recommends that anyone type of bone sarcoma you have and which part What is a with sarcoma should be referred to a specialist of the body is affected. Your MDT will discuss “Your MDT will multidisciplinary sarcoma team for diagnosis and treatment. There your case and your doctor or nurse will talk discuss your team (MDT)? are five national bone sarcoma centres in England you through your options so you are included in case and your and Wales where all bone sarcoma patients deciding what treatment is best for you. doctor or nurse should be treated. These are located in Newcastle, will talk you Manchester & Oswestry, Birmingham, Oxford Chondrosarcoma through your and London. People in Northern Ireland will be options.” Contact Chondrosarcoma Surgery treated in Belfast. People in Scotland will be Sarcoma The first treatment method for chondrosarcoma treated in Glasgow, Edinburgh, Aberdeen, Dundee UK for more is usually surgery. The surgeon will remove the and Inverness. This may mean you will have to information tumour and will aim to take out an area of normal travel some distance for your treatment. Some on high-volume tissue around it too. This is known as taking a treatments like radiotherapy or chemotherapy centres. margin. To achieve this margin of normal tissue, may be given in your local hospital under the some patients will receive limb-sparing surgery. supervision of the specialist sarcoma centre. The aim of this surgery is to preserve the limb Your case will be managed by a team of experts where the tumour is rather than amputating it. from a wide range of health care professions Limb-sparing surgery involves taking out the called a multidisciplinary team (MDT). Your MDT affected bone and replacing it with a bone graft will include your key worker or sarcoma clinical (bone taken from another part of the body).