This booklet has been written for people over 16 years of age. It covers key points about osteosarcoma, its symptoms, diagnosis and treatment. Younger people may also find it useful.
You can visit our website for more information about osteosarcoma: bcrt.org.uk/osteosarcoma
You can also contact us or visit our website to download or request a free printed copy of ‘Your guide to osteosarcoma’. A booklet written for teenagers and young adults with osteosarcoma.
What osteosarcoma is
Osteosarcoma is a type of primary bone cancer. This means it starts in the bones. Most osteosarcomas start in the long bones of the arms and legs (limbs). The most common places are the:
• lower thigh bone nearest the knee
• upper shin bone nearest the knee
• upper arm bone nearest the shoulder
Osteosarcoma can also start in other bones such as the jaw, skull, pelvis, spine, sternum, ribs, lower arm or hand.
Around 1 in every 100 osteosarcomas start in more than one bone at the same time. This is called ‘multi-focal osteosarcoma’.
Who osteosarcoma affects
• Osteosarcoma is the second most common type of primary bone cancer.
• Each year in the UK, around 160 people are diagnosed with osteosarcoma.
• It is the most common type of primary bone cancer in children and young people.
• Osteosarcoma mostly affects people between the ages of 10 and 24 years old and over 60 years old. In particular, it affects people aged between 15 and 19 years old.
• It affects slightly more males than females.
Symptoms of osteosarcoma
The symptoms of osteosarcoma are not specific. They can be similar to other more common, non-cancerous conditions. Symptoms may be mild at first and slowly progress, or they may start suddenly. The symptoms and number of symptoms vary for every person.
Symptoms may include:
• bone pain which might be worse at night, happens all the time or stops and starts, is not helped by painkillers and may get worse over time
• a lump or swelling which may be seen or felt if the tumour is near the skin’s surface. Called a ‘palpable mass’
• problems moving, a limp, stiff limbs or joints, unable to move as normal
• tenderness over the bone or joint
• a broken bone caused by weakening of bone due to a tumour, without having had a fall or accident. Called a ‘pathological fracture’
• bruising easily
• feeling tired or weary (‘lethargy’ or ‘fatigue’), weight loss and loss of appetite, high temperature (fever), feeling breathless, pain with tingling and numbness (‘pins and needles’)
Types of osteosarcoma
There are different types of osteosarcoma. The main 2 types are:
Central osteosarcoma: Starts in the hollow, central part of the bone.
• This is the most common type of osteosarcoma.
• Around 95 in every 100 people with osteosarcoma will have a central osteosarcoma.
• There are 5 sub-types of central osteosarcoma: ‘conventional’, ‘telangiectatic’, ‘small cell’, ‘Giant cell rich’ and ‘low grade central’.
Surface osteosarcoma: Starts on or near the surface of a bone.
• They are rare.
• Around 5 in every 100 people with osteosarcoma will have a surface osteosarcoma.
• There are 3 sub-types of surface osteosarcoma: ‘parosteal’ and ‘periosteal’ which are low grade and ‘high grade surface osteosarcoma’.
There are also different ‘grades’ and ‘stages’ of osteosarcoma:
• Grade is how the cancer cells look under a microscope. High grade cancer cells look very abnormal. They are likely to grow and spread more quickly than low grade cells.
• Stage is how big the tumour is and if it has spread to other parts of the body.
Causes and risk factors of osteosarcoma
Osteosarcoma starts when bone cells become abnormal and grow out of control. It is not fully understood why this happens and, in most cases, the cause of osteosarcoma is unknown. However, there are possible factors which may increase a person’s chance of getting osteosarcoma.
These are called risk factors and include:
• an inherited fault in a gene called ‘RB1’. The person affected is at a higher risk of retinoblastoma, a rare childhood cancer and osteosarcoma
• other inherited conditions caused by a damaged gene or genetic fault. This includes Li-Fraumeni syndrome, Rothmund-Thomson syndrome, Bloom syndrome and Werner syndrome
• previous radiotherapy treatment for cancer and other conditions
Talk to your doctor if you are worried about any of these risk factors.
Diagnosing osteosarcoma
Doctors will carry out different tests before a diagnosis of osteosarcoma can be confirmed. These tests may include:
• X-ray, usually carried out first
• blood tests
• CT scan, MRI scan, PET scan
• a biopsy, where doctors collect a small piece of tumour and look at the cells under a microscope
X-rays and scans help doctors to see the size of the tumour and exactly where in the body it is. Scans also check if the cancer has spread to any other parts of the body. This is called ‘staging’. Using the test results, the doctor will decide on a treatment plan.
Holistic Needs Assessment
You may be offered a ‘Holistic Needs Assessment’. This is where you have a chat with someone in your medical team. They will ask you questions about your worries and concerns. It covers all parts of life. They will work with you to create a support plan. You may be offered an assessment at diagnosis, during treatment or after treatment.
Prognosis
When a person has an illness, doctors try to predict how it will affect that person. For example, how likely it is that the treatment will work, and the person will be cured. This is called a ‘prognosis’.
Doctors will consider lots of things about you and the tumour when making a prognosis. Everyone is different, so doctors can never be sure how osteosarcoma will affect each person.
Since the 1970s, the number of people who survive osteosarcoma has increased. This is because of chemotherapy treatment and better surgical methods.
Treatments for osteosarcoma
Everyone will have a slightly different treatment plan, depending on the grade and stage of the cancer and where it is in the body.
• For osteosarcoma that is high grade, the standard of care in the UK is chemotherapy and surgery.
• For osteosarcoma that is low grade, you may only have surgery.
Most people are diagnosed and have surgery at a bone cancer centre or other specialist cancer centre. Other treatments may be given at a hospital closer to you.
Chemotherapy
Chemotherapy (chemo) is a type of medicine that travels around the whole body in the blood. For osteosarcoma, it is usually given before and after surgery.
The aim of chemo is to:
• shrink the tumour before surgery
• destroy any cancer cells that could have spread to other areas of the body
• destroy any cancer cells left after surgery
In the UK, the current standard chemo treatment for osteosarcoma is made up of 3 medicines: ‘methotrexate’, ‘doxorubicin’ and ‘cisplatin’. Together, they are called ‘MAP’. Sometimes, other chemo medicines may be used.
Surgery
Most people have surgery, either as a standalone treatment or with chemotherapy. The most common time to have surgery is after the initial 10 weeks of chemotherapy. However, this will depend on your treatment plan. Sometimes surgery is done later, during chemotherapy or at the end of chemotherapy. Your surgeon will talk to you about this.
Its aim is to completely remove the primary tumour and keep the body working as normally as possible. This is to stop the cancer from growing or spreading.
If the osteosarcoma is in a limb (arm or leg), your medical team may do ‘limb-sparing surgery’ or ‘limb salvage surgery’. This is not always possible, and they may need to remove the limb by ‘amputation’.
Sometimes it is very difficult to remove a tumour if it is in the pelvis, spine, skull or jaw. If surgery is not possible, radiotherapy may be used instead.
If the tumour has spread to other parts of the body, such as the lungs, these tumours may also be removed by surgery.
Your medical team will talk to you about your options for surgery.
Mepact (Mifamurtide)
Mepact, also called ‘Mifamurtide’, is a medicine sometimes used to treat osteosarcoma. It is given with chemotherapy after surgery. It helps your body destroy any cancer cells that may be left.
In the UK, Mepact is only approved for use after surgery in people aged 2 to 30 years old, with high grade osteosarcoma that has not spread. Your healthcare team should talk to you about whether Mepact may be an option for you.
Radiotherapy
Radiotherapy is not often used to treat osteosarcoma. However, it may be used if surgery is difficult or not possible.
A small number of people may be eligible for Proton Beam Therapy (PBT). However, this is very rarely used to treat osteosarcoma. PBT is a type of high dose radiotherapy that is less likely to damage healthy tissue around the tumour.
Support after treatment
The end of your treatment will come as a welcome relief, but it can also be a time of worry and anxiety. You may like to join a support group or contact other people with primary bone cancer through blogs or on social media.
The Bone Cancer Research Trust’s Support and Information Team can connect you with others who have experience of primary bone cancer. You can also find patient stories on our website at: bcrt.org.uk/patientstories
There are lots of other organisations who can support you too. They are listed on our website at: bcrt.org.uk/usefulorganisations
Follow-up care
Your doctors will want to monitor you for a long time after treatment. This is called ‘follow-up care’. Outpatient hospital visits will be needed. The frequency of these will depend on each person.
Doctors will check your general health, talk about any concerns and do tests to:
• check if the cancer has come back (called ‘relapse’ or ‘recurrence’)
• check for any ‘late effects’ from the cancer treatment
You may also have follow-up care with a surgical team.
In-between visits, it is important you get in touch with your key worker or doctor straight away if you have any problems.
If the osteosarcoma comes back
Sadly, osteosarcoma can come back in some people. If the cancer does return, you may be given a different mix of chemo medicines or need more surgery. You may be invited to take part in a clinical trial and some people may benefit from radiotherapy. Treatments will depend on each person. The doctors and nurses will talk you through the treatment options in detail.
Advanced osteosarcoma
Your doctor may have told you that the cancer can no longer be cured, and the focus now is to make you comfortable and give you as much time as possible with your loved ones. They may talk to you about palliative care, ways to ensure your pain is managed and hospice care. Sometimes, chemotherapy is part of palliative care.
For more information on this, contact our Support and Information Team by calling 0800 111 4855 or visiting: bcrt.org.uk/support/we-are-here-for-you
Also available:
• Your guide to osteosarcoma (a booklet written for young people). Contact us to request your free copy or download from our website.
• Our website. Visit: bcrt.org.uk/osteosarcoma
For more information about the references used to create this booklet, or if you have any questions or feedback, contact our Support and Information Service:
Visit: bcrt.org.uk/support Call: 0800 111 4855
Email: support@bcrt.org.uk
@BCRT
/BoneCancerResearchTrust
Bone Cancer Research Trust
@bonecancerresearchtrust
@bonecancerresearch
Visit bcrt.org.uk/ourhealthinformation to find out how we produce our information resources and to read our disclaimer.
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