GIANT CELL TUMOUR OF THE BONE
Who this booklet is for
This booklet is written for people affected by Giant Cell Tumour of the Bone. It covers key points about Giant Cell Tumour of the Bone, its symptoms, diagnosis and treatment.
You can also visit our website for more information: bcrt.org.uk/giantcelltumour
What Giant Cell Tumour of the Bone is
Giant Cell Tumours of the Bone are not usually 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 are named based on how they look under a microscope. Many individual cells join to create a single large cell or ‘giant cell’.
Who Giant Cell Tumour of the Bone affects
Giant Cell Tumour of the Bone affects one to two people in every million, each year worldwide. Most of these tumours affect people aged between 20 and 45 years of age.
Symptoms of Giant Cell Tumour of the Bone
Giant Cell Tumours of the Bone can cause a wide range of symptoms. They may be mild at first and slowly progress or they may suddenly appear. The symptoms and number of symptoms vary for every person.
Symptoms 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’
Tumours which develop on the spine, particularly on 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
Causes of Giant Cell Tumour of the Bone
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. For more information about Paget’s disease, visit Paget’s Association website: www.paget.org.uk or call them on 0161 799 4646.
Diagnosing Giant Cell Tumour of the Bone
Doctors will carry out several different tests before a diagnosis of Giant Cell Tumour of the Bone can be made. Tests may include:
• X-ray. This is usually carried out first
• blood tests
• CT scan, MRI scan, PET scan
• biopsy. This is where doctors collect a small piece of tumour and the cells are looked at under a microscope
X-rays and scans help doctors to see the size of the tumour and exactly where in the body it is. 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 if the person is likely to be cured. This is called a ‘prognosis’. Doctors consider lots of things about you and the tumour when making a prognosis. Everyone is different, so doctors can never be sure how Giant Cell Tumour of the Bone will affect each person.
Treatments for Giant Cell Tumour of the Bone
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.
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’ or a ‘wide surgical excision’ of the tumour:
• Curettage surgery involves scraping out the tumour cells from the affected area to create a hole. The hole may then be filled with bone cement or a bone graft to help make the bone stronger and to try and prevent the tumour coming back.
• A wide surgical excision involves removing the tumour along with some healthy tissue, called taking a ‘wide surgical margin’. This can lower the risk of the tumour returning but may have a larger impact on how you look and how your bone functions.
Targeted drug therapy
There is ongoing research into the development of ‘targeted drug therapies’ for Giant Cell Tumour of the Bone. 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.
Radiotherapy
Radiotherapy is only used in rare cases. It involves treating the tumour with high doses of concentrated radiation. It may be used if the tumour cannot be removed by surgery.
Malignant transformation of Giant Cell Tumour of the Bone
Giant Cell Tumours of the Bone are not usually cancerous or life-threatening. But in very rare cases, they can be cancerous (‘malignant’) at diagnosis, or if they return (‘recurrence’). They may also become cancerous after treatment, such as radiotherapy.
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.
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 like to join a support group or contact other people with primary bone tumours 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 tumours. You can also find patient stories on our website at: bcrt.org.uk/patientstories
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 and the frequency of these may vary between patients.
Doctors will check your general health, talk about any concerns and do tests to:
• check if the tumour has come back (called ‘relapse’ or ‘recurrence’)
• check for any ‘late effects’ from treatment
You may also have follow-up care with a surgical team. In-between visits, it is important you get in touch with your doctor straight away if you have any problems.
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 the 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.
Also available:
• Our website. Visit: bcrt.org.uk/giantcelltumour
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
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Review dates for this booklet: Version 1.0 produced: 04/25 Next review due: 04/28