Osteosarcoma in children and teenagers: bone pain, tests and treatment in the UK

Osteosarcoma is a type of primary bone cancer, which means it starts in the cells of the bone rather than spreading there from somewhere else. Doctors sometimes use the term bone sarcoma for primary bone cancer. Sarcomas are cancers that start in connective tissue, and Cancer Research UK describes osteosarcoma, chondrosarcoma and Ewing sarcoma as the most common types of primary bone cancer.

Bone is a living tissue. It is constantly being repaired and reshaped by different bone cells. In osteosarcoma, abnormal cells multiply and begin to break down the bone, which weakens it. Cancer Research UK says cells can break away from a bone tumour and travel to other organs, usually the lungs or other bones, where they can grow into secondary tumours. This is why a full assessment looks beyond the bone where symptoms began.

Osteosarcoma is not the same as secondary bone cancer, which is cancer that has spread to the bones from elsewhere, and it is not the same as myeloma. Both are treated differently from primary bone cancer.

The NHS says the symptoms of primary bone cancer depend on the type and size of the cancer and where it is. In a growing child, bone pain is common for many reasons, so the pattern matters: pain that keeps coming back, that is localised to one area and that is worse at night deserves attention.

• Bone pain or tenderness that may be constant or come and go, and may be worse at night.

• A lump or swelling, which may not always be easy to see or feel.

• Difficulty moving a joint or a limp if the tumour is close to a joint.

• Less commonly: feeling very tired, a high temperature with sweating, or losing weight without trying.

• Breaking a bone, which the NHS describes as a very rare symptom of bone cancer.

The NHS says it is not known what causes most primary bone cancers. Some factors are linked with a higher chance of developing bone cancer: having had radiotherapy or chemotherapy for cancer in the past, particularly during childhood; having an inherited condition such as hereditary retinoblastoma, Li-Fraumeni syndrome or Werner syndrome; and having another bone condition such as Paget's disease of bone or a non-cancerous bone tumour.

Because the cause of most primary bone cancers is not known, families should not blame themselves for missing earlier signs. Growing pains and sports injuries are common in this age group, which is why pain that persists, or that is worse at night, deserves a proper check.

A child with a worrying bone symptom will usually first see a GP. The NHS says the GP will look at the painful area, may feel the lymph nodes, and will ask about any family history of cancer. Where there is unexplained bone swelling or pain in a child or young person, NICE guideline NG12 suggests considering a very urgent direct access X-ray. If the X-ray raises the possibility of bone sarcoma, the same guidance suggests a very urgent referral for specialist assessment, for an appointment within 48 hours.

A referral does not mean a diagnosis of cancer; many bone problems in children have other causes. The reason for moving quickly is that early assessment of a possible bone sarcoma matters.

Test results show how big the cancer is and how far it has spread (the stage) and how abnormal the cells look under the microscope (the grade). The NHS says the stage and grade help the specialist decide what treatment is needed.

A group of specialists looks after the person throughout diagnosis and treatment, and the NHS says the team includes a clinical nurse specialist who is the main point of contact. Sarcoma UK runs a support line for people affected by bone sarcoma, and families can ask the team about this and other charities.

The NHS says primary bone cancer can often be treated, and that the treatment depends on the type of bone cancer, where it is, the person's general health and their preferences. Surgery and chemotherapy are the main treatments. Radiotherapy is not always used, but the NHS says it may be needed for osteosarcoma if surgery is not possible. Targeted medicines may be recommended depending on the type, size and stage of the cancer.

Chemotherapy is often given to shrink a tumour before surgery, which can make it easier to remove, and to reduce the chance of the cancer coming back afterwards. Surgery may involve cutting out the affected bone and replacing it with a metal implant or bone from another part of the body, or amputation of the limb, which the NHS says may be needed if the tumour has spread to the surrounding area. Cancer that has spread to another part of the body may sometimes be removed too. Physiotherapy helps recovery, and regular follow-up appointments check progress and deal with problems.

If bone cancer is advanced and cannot be cured, the NHS says treatment aims to limit the cancer and its symptoms and help the person live longer, supported by a palliative care or symptom control team. Families can ask their specialist team directly what the aims of treatment are in their child's situation.

Cancer Research UK says survival depends on many factors, including the stage and type of the cancer, and that no one can predict exactly how any individual will do. The NHS says you will have regular check-ups during and after treatment, with scans and tests depending on the stage, and that you should not wait for the next appointment if you have symptoms or side effects you are worried about.

Living with osteosarcoma as a child or teenager affects school, friendships, mobility and mental health as well as the body. The NHS says physiotherapy is part of recovery after bone surgery, to help regain mobility, and that the clinical nurse specialist is the main point of contact during and after treatment. Families can ask the specialist team what help is available with school, mobility and emotional support.

See a GP promptly if your child has pain or tenderness in a bone, particularly if it is worse at night, a lump or swelling that is not normal for them, unexplained weight loss, or pain in bones or joints that makes moving difficult. The NHS says you might not have bone cancer but it is important to get symptoms checked, and finding bone cancer early can mean it is easier to treat.

If your child has a sudden severe injury, cannot move a limb or has severe uncontrolled pain, seek urgent care through NHS 111, an urgent treatment centre or A&E as appropriate.