Osteosarcoma: symptoms, causes, treatment and survival

The NHS says the symptoms of primary bone cancer depend on the type and size of the cancer and where it is. The main symptoms are below. Most bone pain is not cancer, but these signs should be checked.

• Bone pain or tenderness, which 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.

• Problems moving around: if the cancer is close to a joint it may be difficult to move the joint and you may walk with a limp.

• Less commonly: feeling very tired even after a good night's sleep, a high temperature with sweating, losing weight without trying, or breaking a bone (a very rare symptom).

Osteosarcoma is a cancer that starts in cells that form bone. The NHS describes primary bone cancer as cancer that starts in the bones, also known as sarcoma, and says it is very rare. It can occur in any bone, but it most commonly affects the hips (pelvis), ribs and bones in the arms and legs. Osteosarcoma is one of the three most common types, alongside chondrosarcoma and Ewing sarcoma.

It is different from secondary bone cancer, which starts in another part of the body and spreads to the bones, and which is managed differently, as the NHS notes.

The NHS says it is not known what causes most primary bone cancers. Some types are more common in certain age groups, and osteosarcoma often affects children and teenagers aged 10 to 19 years. You are also more likely to get bone cancer if you have had radiotherapy or chemotherapy for cancer in the past, particularly during childhood, if you have an inherited condition such as hereditary retinoblastoma, Li-Fraumeni syndrome or Werner syndrome, or if you have another bone condition such as Paget's disease of bone or a benign bone tumour.

Having a risk factor does not mean you will develop bone cancer.

The NHS says osteosarcoma often affects children and teenagers aged 10 to 19 years, while chondrosarcoma tends to affect adults aged 30 to 60 and Ewing sarcoma is more common in children and teenagers but can also affect adults. Having radiotherapy or chemotherapy for cancer during childhood, or an inherited condition such as hereditary retinoblastoma, Li-Fraumeni syndrome or Werner syndrome, increases the chance.

Because children and young people are treated by specialist teams, the NHS says your team includes a clinical nurse specialist as your main point of contact, and signposts Sarcoma UK, which runs a free support line open 10am to 3pm, Monday to Friday except public holidays.

The NHS says to see a GP if you have pain or tenderness in a bone, particularly if it is worse at night, if you notice a change that is not normal for you, such as a lump or swelling or unexpected weight loss, or if pain in your bones or joints is making it difficult to move around. It adds that you might not have bone cancer, but finding it early can mean it is easier to treat.

The GP will look at the painful part of the body and may feel your lymph nodes. They may refer you to a specialist in hospital, which the NHS says may be an urgent referral and does not definitely mean you have cancer.

The NHS says that if a GP thinks you could have bone cancer, you will be referred to a bone specialist (an orthopaedic doctor) for tests. These may include an X-ray, a CT or MRI scan, a bone biopsy where a surgeon removes a small sample of bone to be checked for cancer, blood tests and a bone marrow biopsy.

It should take about 2 weeks for the biopsy results, though sometimes longer, which does not mean anything is wrong. The stage and grade of the cancer, meaning how big it is and how far it has spread, and how abnormal the cells look, will help the specialist decide on treatment. Your team includes a clinical nurse specialist who is your main point of contact.

The NHS says primary bone cancer can often be treated, and that treatment depends on the type of bone cancer, where it is, your general health and your preferences. Surgery and chemotherapy are the main treatments, with radiotherapy or targeted medicines also used for some types.

Cancer Research UK says survival estimates for bone cancer are more uncertain than for common cancers because some statistics are based on small numbers, and that no one can tell you exactly how long you will live. For osteosarcoma diagnosed in England between 2014 and 2016, it says more than 80 out of 100 people survive their cancer for 1 year or more, and almost 60 out of 100 survive for 5 years or more.

The figures do not take account of stage, grade, age, where the cancer is or how well treatment works, so your doctor can tell you more about your own outlook.

The NHS says you will have regular check-ups during and after treatment, with tests and scans depending on the stage, and that you do not need to wait for the next check-up if you have symptoms or side effects you are worried about. Physiotherapy helps people regain mobility after bone surgery, and regular follow-up appointments check progress and deal with problems.

For young people and families, the emotional impact is large, and the clinical nurse specialist and charities can help. The NHS signposts Sarcoma UK, which it says runs a free support line open from 10am to 3pm Monday to Friday except public holidays.

On the NHS the route begins with a GP and referral to a bone specialist, an orthopaedic doctor, for tests. Because the cancer is very rare, it is reasonable to ask which specialist team will manage your biopsy, surgery and chemotherapy, and who your clinical nurse specialist is. Some people seek a private consultation for a faster appointment or a second opinion, and the tests and treatments described above are the same in either setting.