This information is written for people affected by primary bone tumours, their families and friends and the general public. It is to help you understand more about a tumour, called ‘Giant Cell Tumour of the Bone’. It is not usually cancerous but it can be locally aggressive. This webpage explains what Giant Cell Tumour of the Bone is, the symptoms, how it is diagnosed and how it is treated.
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Webpage published: December 2024. Next review due: December 2027.
Giant Cell Tumours of the Bone are usually not cancerous, but they can be locally aggressive. This means they can grow quickly and destroy surrounding bone and soft tissue.
Giant Cell Tumours of the Bone make up to 5 in every 100 primary bone tumours worldwide.
This type of tumour usually develops next to the joints in the long bones of the body. For example, in the:
- thigh bone (femur)
- shin bone (tibia)
- lower arm bone (radius)
The most common place this tumour develops is around the knee. Around half of Giant Cell Tumours start here.
Giant Cell Tumours of the Bone are named based on how they look under a microscope. Many individual cells join to create a single large cell or ‘giant cell’.
Our glossary explains the meaning of any medical words you may come across in this webpage.
Giant Cell Tumour of the Bone affects one to two people in every million, each year worldwide.
Most of these tumours affect people between 20 and 45 years of age. Giant Cell Tumours of the Bone can also affect children and older people, but this is rare.
We do not yet know why this tumour is more likely to affect people in Southern India and China. In these countries, Giant Cell Tumours of the Bone make up 20 in 100 primary bone tumours compared with up to 5 in 100 worldwide.
Giant Cell Tumour of the Bone can cause a wide range of symptoms. Doctors may call these ‘clinical signs’ or talk about ‘presenting features’ or ‘presenting symptoms’.
Common symptoms of Giant Cell Tumour of the Bone include:
- bone pain
- swelling
- a lump, with or without pain
- tenderness over the bone or joint
- loss of function or mobility in the affected limb
- a change to the look or feel of the joint
- a build-up of fluid in the joint near the tumour
- a broken bone caused by weakening of bone due to a tumour, without having had a fall or accident. This is called a ‘pathological fracture’
The location and size of the tumour may affect the symptoms you get. Tumours which develop on the spine, particularly in the sacrum (base of the spine where it connects to the pelvis), can lead to:
- back pain
- neurological effects, such as weakness or numbness in the arms and legs or a sensation of pins and needles
Some people may have no symptoms and the tumour may be found in a routine test. Not everyone will have the same symptoms and they can affect people in different ways. They may be mild at first and slowly progress or they may happen suddenly. Some people have symptoms that disappear for a while and then suddenly return.
Sometimes, people have symptoms for weeks or months before they are diagnosed. This can be because the symptoms of Giant Cell Tumours of the Bone can be quite general and similar to those of other conditions.
Many people struggle to get a correct diagnosis when they first see a doctor. Because lots of people have pain that stops and starts, doctors can think the cause of the pain or other symptoms is short-term.
The cause of Giant Cell Tumour of the Bone is not known. In rare cases, Giant Cell Tumour of the Bone may develop as a complication of Paget’s disease of the bone. Paget’s disease affects the normal repair and renewal process of bone (‘remodelling’). For more information, visit Paget’s Association website or call 0161 799 4646.
Getting a diagnosis
The symptoms of Giant Cell Tumour of the Bone are non-specific. There is no one clear sign that doctors can easily look for to make a diagnosis. Most people go to their doctor if they are worried and some people go to their local hospital’s emergency department (A&E).
Some people are sent (‘referred’) quickly for more tests or a second opinion. But often, people have to go back to their doctor quite a few times before this happens. Primary bone tumours are very rare and many GPs (general practitioners) will have very little or no experience of them.
The Bone Cancer Research Trust (BCRT) is trying to find ways to reduce the time between a person noticing symptoms and getting a diagnosis.
Diagnostic tests
If your GP suspects you have Giant Cell Tumour of the Bone, you should be ‘referred’ to a bone cancer centre. Once referred, doctors will carry out several different tests before a diagnosis of Giant Cell Tumour of the Bone can be confirmed. These tests may include:
- X-ray. This is usually carried out first. It should be done from 2 different angles (in 2 planes) to get a good image of the bone
- biopsy of the tumour
- blood tests
- CT scan
- MRI scan
- PET scan
Imaging, such as X-rays and scans, help doctors to see the size of the tumour and exactly where in the body it is.
A biopsy involves taking a small sample of the tumour and examining it under a microscope. Results from a biopsy can take up to 2 weeks to analyse.
Using all the test results, doctors can confirm a diagnosis of Giant Cell Tumour of the Bone and decide on a treatment plan.
Prognosis
When a person has an illness, doctors try to predict how it will affect them. For example, how likely it is that the treatment will work, and how likely it is that the person will be cured. This is called a ‘prognosis’.
Lots of different things are considered when doctors make a prognosis for Giant Cell Tumour of the Bone. The main ones are:
- where in the body the tumour is, since this can affect which treatments will work best
- the size and grade of the tumour
- the age and general health of the person
- how the tumour responds to treatment
Because everyone is different, doctors can never be sure how Giant Cell Tumour of the Bone will affect each person.
Holistic Needs Assessment
It may help to talk about any feelings of anxiety or concern once your diagnosis has been confirmed. Some hospitals offer a ‘Holistic Needs Assessment’. This is where you can chat with someone in your medical team. They will ask you questions about your worries and concerns. It covers all parts of life, not just how the tumour and treatments affect the body. A support plan will be made to help you manage your worries and concerns. You may be offered an assessment around the time of diagnosis, during treatment or after treatment has ended.
If your hospital does not offer a Holistic Needs Assessment, you can still talk to your medical team about any worries or concerns you have. They are there to help.
Where you will be treated
Where you are treated will depend on where the tumour is and a few other things.
You will usually have your surgery at a bone cancer centre. You may have to travel a long way to get there. Take a look at our map of UK bone cancer centres in our downloadable resource: Bone cancer centres and hospital treatment centres.
In rare cases, you may have radiotherapy or chemotherapy (chemo) to treat Giant Cell Tumour of the Bone. If you do, this may take place at a bone cancer centre or a different hospital closer to you. Your medical team will talk to you about this, if it is relevant for you.
Who will be involved in treatment
You will be treated by a team of people who are experts in bone tumours. These people may include:
- surgeons
- nurses, including a clinical nurse specialist (CNS)
- social workers
- support workers
- dieticians
- physiotherapists
- other experts
This group of people is called a ‘multi-disciplinary team’ (MDT). The MDT plan and decide on what treatment and care is best. They should include you in the decision making.
Each patient has a clinical nurse specialist (CNS), sometimes called a ‘key worker’. The CNS is a constant point of contact through treatment. They will give support and listen to questions or worries you may have.
Types of treatment
In the UK, the most common treatment for Giant Cell Tumour of the Bone is surgery. Targeted drug therapy, such as ‘denosumab’, may sometimes be used. In rare cases, chemotherapy and radiotherapy may be used.
The treatments you have will depend on the location of the tumour, its size, how aggressive it is, whether a fracture has occurred, whether the tumour has come back (‘recurred’), your age and a few other things. Your medical team will talk to you about your treatment options. Treatment of Giant Cell Tumours of the Bone should involve patients and doctors working together to find the best care or treatment plan.
Remember, if you are not living in the UK, you may have different tests and treatments. It will depend on the treatment guidelines in your country. If you have any questions about this, talk to your medical team or contact our Support and Information Team.
Surgery
Since Giant Cell Tumours of the Bone often develop near the joints, the main aim of treatment is to:
- remove the tumour to reduce the risk of it returning
- maintain the function of the bone and how it looks as far as possible
The 2 types of surgery which may be used to remove the tumour are:
Curettage surgery: Involves scraping out the tumour cells from the affected area to create a hole. The surgeon may then fill the hole with bone cement or a bone graft to help make the bone stronger and to try and prevent the tumour coming back.
Wide surgical excision or resection: If the tumour is aggressive and has damaged a lot of the bone, you may have more invasive surgery. This involves taking ‘wide surgical margins’, where the tumour is removed along with some healthy tissue. The affected bone is reconstructed using bone grafts or a metal implant. This type of surgery can lower the risk of the tumour returning but may have a larger impact on how you look and how your bone functions. This means it is usually only used for more aggressive Giant Cell Tumours or Giant Cell Tumours which return.
Targeted drug therapy
There is ongoing research into the development of ‘targeted drug therapy’ for Giant Cell Tumour of the Bone. A targeted medicine called ‘denosumab’ may be used. Denosumab has been found to work well to control Giant Cell Tumour of the Bone. It works by stopping the tumour from dissolving the surrounding bone. This allows the bone to heal so surgery can be performed and there is less impact on how the bone looks and functions.
Denosumab is sometimes used:
- before surgery to stabilise the surgical removal of the tumour
- in cases where Giant Cell Tumour of the Bone cannot be removed with surgery
- in cases where surgery would be disabling
If you are given denosumab, you will have regular X-rays to check how the medicine is affecting the tumour. Doctors will then decide on the best time to operate.
You can find out more about denosumab and possible side effects on the Royal Orthopaedic Hospital’s website.
Radiotherapy
Radiotherapy is only used in rare cases. It involves treating the tumour with high doses of concentrated radiation. It may be used for Giant Cell Tumours of the Bone which cannot be removed by surgery.
Radiotherapy can increase the risk of a non-cancerous and less aggressive Giant Cell Tumour turning into a cancerous (‘malignant’) tumour in the future. This is called ‘radiation-induced sarcoma’.
This webpage from the NHS website shows a video of what happens during radiotherapy.
Malignant transformation of Giant Cell Tumour of the Bone
Giant Cell Tumours of the Bone are not usually cancerous. But in very rare cases, Giant Cell Tumours can be cancerous (‘malignant’) at diagnosis, or if they return (‘recurrence’). They may also become cancerous after treatment, such as radiotherapy. This is called ‘primary and secondary malignant Giant Cell Tumour of the Bone’.
- Primary malignant Giant Tumours of the Bone make up around 2 in every 100 cases of Giant Cell Tumours of the Bone.
- Secondary malignant Giant Tumours of the Bone make up around 2 in every 100 cases of Giant Cell Tumours of the Bone.
There are cases where cancerous tumours like osteosarcoma, fibrosarcoma or malignant fibrous histiocytoma have developed from Giant Cell Tumour of the Bone treated with radiotherapy.
The transformation of a non-cancerous Giant Cell Tumour into a cancerous Giant Cell Tumour can happen up to 20 years after initial treatment. This shows how important surgery is to remove all the tumour, so there is less risk of it returning.
Chemotherapy (chemo)
Currently, chemotherapy (chemo) is not an effective treatment for Giant Cell Tumour of the Bone. It is instead used to treat cancerous (‘malignant’) Giant Cell Tumour of the Bone.
Setbacks
Things may not always go as smoothly as you and the doctors would like. There may be times when you feel really unwell, get an infection or need to have more surgery. These setbacks are a normal part of treatment. People will have different setbacks at different times, but it does not mean that the treatment is not working.
Support after treatment
The end of treatment might come as a welcome relief but it can also be a time of worry and anxiety. You may be worried about the tumour coming back. You may feel lost and alone or be worried about leaving behind the medical team and support network at the hospital. Your family may also feel like this. These are all normal feelings.
You may like to join a support group or contact other people with primary bone tumours, through blogs or on social media. Our Support and Information Team at the Bone Cancer Research Trust provide support and information for people affected by primary bone cancer and bone tumours. They can also connect you with other people who have experience of primary bone tumours.
GCT Support is an organisation in the USA which also offers support and information about Giant Cell Tumours of the Bone.
Follow-up care
When you finish treatment, your doctors will want to monitor you for a long time. This is called ‘follow-up care.’
You will need to attend outpatient hospital visits on a regular basis. How often will depend on each person. It might be every 3 months for the first 2 years after finishing treatment, then every 6 months in years 3, 4 and 5. If the tumour comes back, you will have follow-up care for a total of 10 years.
At these visits, doctors will check your general health, talk about concerns and run important tests to:
- check if the tumour has come back (called ‘relapse’ or ‘recurrence’)
- check for any ‘late effects’ from treatment
A chest X-ray and X-ray of the site of the tumour will be taken at each visit. These visits can also be useful to talk about any emotional or practical worries or problems you may have.
You may also have follow-up care with a surgical team. They will look out for surgery-related problems.
In-between visits, it is important to get in touch with your doctor straight away if you have any problems or concerns.
Rehabilitation
During and after treatment, many people benefit from ‘rehabilitation’ or ‘rehab’. This is a form of therapy that helps you regain strength and tackle day-to-day activities.
Rehab services include:
- Physiotherapists: Help people return to an active lifestyle, restoring strength, movement and function.
- Occupational therapists: Help improve people’s ability to do everyday tasks.
- Dieticians: Offer advice on what to eat (nutrition) during and after treatment.
- Prosthetists: Design and create prosthetic limbs for people who have had amputations.
- Orthotists: Provide aids for people who have had surgery, such as splints or special footwear.
Scanxiety
Scan anxiety, or ‘scanxiety’, is the anxiety, worry, or fear you might feel in the lead up to a scan or scan results. These feelings, and any others you may have, are normal.
If Giant Cell Tumour of the Bone comes back
The outcome for people with Giant Cell Tumour of the Bone is generally positive, provided the tumour is controlled by treatment. If controlled, there is less risk of it returning.
If Giant Cell Tumour of the Bone comes back in the same area as the original tumour, this is called a ‘local recurrence’. The treatment you are offered may be more aggressive than before.
Giant Cell Tumours can spread to other parts of the body, usually the lungs. This is called ‘metastasis’. It can affect up to 7 in every 100 people with Giant Cell Tumours. Further treatment for this may be surgery or denosumab.
The Bone Cancer Research Trust's information has been created using peer reviewed clinical and scientific publications, reviews and case studies. Peer review is when the work of one scientist or doctor is checked by other experts in the same subject area. This helps make sure the study data is 'reliable'.
If you are interested in reading more, below are the references used to compile our information about Giant Cell Tumour of the Bone.
You can also visit our Request Information Materials page to order printed resources.
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3. WHO Classification of Tumour Editorial Board. WHO Classification of Tumours of Soft Tissue and Bone Tumours. 5th ed. WHO Classification of Tumours: International Agency for Research on Cancer; 2020.
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5. Hosseinzadeh S, Tiwari V, De Jesus O. Giant Cell Tumor (Osteoclastoma). StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024. Available from: https://www.ncbi.nlm.nih.gov/books/NBK559229/
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7. Verma V, Puri A, Shah S, Rekhi B, Gulia A. Giant Cell Tumor Developing in Paget's Disease of Bone: A Case Report with Review of Literature. J Orthop Case Rep. 2016 Sep-Oct [accessed 17 December 2024];6(4):103-107. doi: 10.13107/jocr.2250-0685.594
8. Jha Y, Chaudhary K. Giant Cell Tumour of Bone: A Comprehensive Review of Pathogenesis, Diagnosis, and Treatment. Cureus. 2023 Oct 13 [accessed 17 December 2024];15(10):e46945. doi: 10.7759/cureus.46945
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