This information has been written for patients, their families and friends and the general public to help them understand more about primary bone cancer and how it is diagnosed and treated.
For a downloadable source of this information, please visit our 'Downloadable Information Materials' page to view all of our fact sheets and our 'Overview of the Disease, Diagnosis and Treatment'.
Primary bone cancer, sometimes known as a bone sarcoma, is a cancer that starts in a cell found in the bone.
Sarcoma is the name given to a cancer that starts in the connective tissue. The connective tissue plays a supportive role in the body and includes tissues such as the bone, cartilage, muscle and fat.
Primary bone cancer can develop in any bone in the body but most commonly is found in the long bones of the lower body (34%), such as the thigh (femur) or shin bone (tibia).
Every year, around 562 people in the UK alone will develop primary bone cancer at an average rate of 2 cases per day. In 2017 the total number of cancer cases in UK was 363,484. Primary bone cancer represents 0.155% (rounded up to 0.2%) of all cancer diagnosis in UK.
When combining known primary bone cancer incidences, there are approximately 52,000 cases of primary bone cancer cases reported each year worldwide, and a diagnosis of primary bone cancer is made every 10 minutes somewhere in the world.
Cancer cells can separate from a tumour elsewhere in the body and spread to the bones. This is called secondary bone cancer and its management can be very different to primary bone cancer; please see our information section on secondary bone cancer for more information.
Symptoms of primary bone cancer can be very general and often appear similar to the symptoms of sports injuries, growing pains or many other common conditions such as tendonitis or arthritis. They may also vary depending on the location and the size of the tumour. For more information on the symptoms of bone cancer, see here.
Yes, there are several types of primary bone cancer.
85% of all primary bone cancers diagnosed are of the 4 most common types, which are:
There are also several less common forms of tumours that arise in the bone, these are:
- Spindle Cell Sarcoma of the Bone: such as Pleomorphic Undifferentiated Sarcoma (previously known as Malignant Fibrous Histiocytoma)
- Angiosarcoma of the Bone
- Giant Cell Tumour of the Bone (a non-cancerous tumour)
Bone marrow is found within the bone but cancers which develop in the bone marrow (myeloma and leukaemia) are not primary bone cancers. Lymphomas start in the lymph
nodes and then may infiltrate the bone marrow. The bone marrow is
part of the lymphatic system, so the disease can originate there.
Primary bone cancer is unusual in that it affects a wide range of age groups. It can affect children, adolescents, young adults and can also occur in elderly people; whereas the majority of other primary cancers occur mainly in older adults (1,2).
The four common forms of primary bone cancer in terms of their incidence and anatomical sites are:
- Most common in adulthood
- Highest incidence: 30-60- years old
- Common sites: long bones, pelvis and ribs
- Most common in children and young adults
- Biphasic incidence peak: 15-19-years old, 70-89-years old
- Common sites: long bones, especially around the knee
- Second most common in children and young adults
- Highest incidence: 10-20-years old
- Common sites: long bones, pelvis, ribs, vertebrae
Primary bone cancer is rare and often misdiagnosed as other conditions e.g sports injuries, growing pains or arthritis. Increased awareness of primary bone cancer amongst GPs, healthcare professionals and patients, is key to earlier diagnosis and improved outcomes.
If you have symptoms of primary bone cancer, you will usually start by seeing your GP, visiting the local hospital emergency department (A&E) or another health professional such as a physiotherapist or a hospital doctor.
As primary bone cancers are rare and many GPs may never have seen a case before, it is quite common for patients to visit their GP 3 or 4 times before receiving a referral. This may also mean a referral is sometimes made by Accident & Emergency Departments or another health professional.
Going to the GP
Your GP will examine the area, look for any lumps or swelling and ask you about your symptoms and the pain you are experiencing:
- Does it come and go?
- Is it worse at night?
- Is it relieved with painkillers?
- Is there a lump or swelling that can be seen or felt?
- Is it tender to touch?
- Do you have an unexplained limp, stiff joints, or reduced mobility?
- Does the affected area bruise easily?
- Are you experiencing tiredness, fever, weight loss or loss of muscle tone?
Your GP may refer you for blood tests and an X-ray of the affected areas. If the X-ray shows an abnormal area or primary bone cancer is suspected, you will be referred to a specialist bone sarcoma multidisciplinary team (MDT) for further assessment.
To help GPs, the National Institute for Health and Care Excellence (NICE) has produced a Suspected Cancer: recognition and referral guideline (NG12) (3). The guideline says the following:
- Children, teenagers and young adults with unexplained bone swelling or pain should have an urgent X-ray within 48 hours. If the X-ray suggests a possible bone cancer, your GP should refer you to a specialist within 48 hours.
- Adults should be seen by a specialist within 2 weeks if the results of an X-ray suggest a bone cancer.
If the X-ray is normal but symptoms persist, the patient should be followed up and/or a repeat X-ray or MRI scan should be carried out within 2 weeks (adults) or within 48 hours (child).
What happens if primary bone cancer is suspected?
If a primary bone cancer or bone tumour is suspected, you will be referred to a bone cancer surgical centre for diagnosis although some head and neck, spinal and paediatric biopsies may take place in a bone cancer MDT-approved specialist centre. You will usually be referred to the bone cancer surgical centre closest to where you live.
The bone cancer centres in the UK and Ireland are:
There are five centres in England:
Patients in Wales travel to Oswestry or Birmingham bone cancer surgical centres.
There are five centres in Scotland:
Republic of Ireland
Patients are seen in Belfast.
Please view our PDF file here for a full list of all the centres or specialist hospitals in the UK and Ireland.
At the bone sarcoma surgical centre, you will undergo a series of diagnostic tests and investigations to check your organ function before any treatment is started. Each patient, and tumour subtype, may undergo different diagnostic tests that are tailored to the needs of the individual patients. Your test results will be discussed by the specialist bone sarcoma MDT based at the bone sarcoma surgical centre who work together to reach a diagnosis.
The diagnostic tests are:
An X-ray is a procedure used to produce images of the inside of the body using radiation. This is likely to be the first test used to diagnose bone cancer. X-rays are studied to detect swelling, abnormal bone growth and the breakdown of an area of bone. A chest X-ray is sometimes taken to see if the cancer has spread to the patient's lungs.
For more information on X-rays, please click here.
A CT (Computerised Tomography) scanner is a machine that takes a number of X-ray pictures from different angles to form a 3D image of the area of the body being looked at. The CT scan helps doctors to understand in more detail the size of the tumour, the exact location of the tumour and whether there are signs of the tumour having spread elsewhere in the body. A CT scan should take around 10-20 minutes. Additional CT scans of the chest can show if the cancer has spread to the patient's lungs.
For more information on CT scans, please click here.
An MRI (Magnetic Resonance Imaging) scan is similar to a CT, but magnetism and radio-waves are used instead of X-rays. These scans build up a very detailed 3D image to give more information about the tumour. The MRI provides a picture of where the tumour is in the bone, and whether it has grown out to involve the surrounding soft tissues. MRI scans help doctors decide on the right treatment plan for an individual.
For more information on MRI scans, please click here.
PET (Positron Emission Tomography) can be used to diagnose cancer. These scans examine the whole body rather than one specific area. This allows doctors to determine the location and size of the tumour, if the tumour has spread elsewhere in the body and how well the patient is responding to treatment. As this scan examines the whole body it can take around an hour to complete and requires the patient to lie flat on a bed as the scanner passes over them.
Before the scan, the patient will receive an injection of harmless radioactive glucose (known as a radiotracer). This radiotracer is taken into cells that are active. As cancer cells grow and divide more rapidly than healthy cells, they take up the radiotracer more readily than healthy cells. When the radiotracer has been taken up by the cancer cells, these cells break down this substance and release particles known as positrons. It is the released positrons that can be located during the PET scan to create a 3D image showing varying brightness levels on the scan relating to a higher number of cancer cells in that area.
PET scans are often combined with CT scans (PET-CT) to create a more detailed picture.
For more information on PET scans, click here.
Isotope Bone Scan
Bone scans are used to look for abnormalities in the bones. Patients who are suspected of having primary bone cancer will often have a full body bone scan. The scan is carried out using a gamma camera, which detects areas of radioactivity. Much like CT and MRI scans, patients lie flat on a bed while the scan is taking place.
Before having the scan, the patient will have an injection containing a tiny amount of a harmless radioactive substance (known as a radionuclide) into the blood. This substance is taken up by the bones over a few hours and can be detected by the gamma camera. The radionuclide will collect in larger amounts in areas of high activity (where breakdown and repair of the bone is occurring) and these areas are referred to as ‘hot spots’, which appear as darker areas on the scan image. These represent areas which may be cancerous or represent another medical condition, such as arthritis.
For more information on bone scans, please click here.
Blood tests can be carried out to assess the general health of a patient. This sample is tested in a laboratory to show the levels of certain substances in the blood, to check for infection and to help diagnose many different conditions and diseases - including cancer.
The blood tests carried out to help diagnose primary bone cancer may include:
A Full Blood Count (FBC): a full blood count shows the number of each cell type (red cells, white cells, platelets, haemoglobin) in the patient’s blood to check that the levels are normal and healthy
Urea and Electrolytes (U&Es): these tests determine how well the kidneys are working. Urea is a waste chemical removed by the kidneys and electrolytes include sodium, potassium and chloride. The levels of these substances may alter during an illness or disease treatment and it is important they remain balanced for the body to function normally.
C-Reactive Protein (CRP): this protein is produced by the liver when there is an increase in inflammation in the body, a process which occurs during cancer
Erythrocyte Sedimentation Rate (ESR): this test looks for any signs of inflammation in the body and detects the presence of any abnormal cells in the blood
Alkaline Phosphatase (ALP): alkaline phosphatase is mostly produced by the liver but can also be made in the bones. This enzyme is measured in patients with suspected osteosarcoma to see if there is any weakening or destruction of the bones
LDH– Lactate dehydrogenase: LDH is an enzyme the body uses during the process of turning sugar into energy for your cells to use. LDH is found in many of the body’s tissues and organs including the muscles. Usually the concentration in the blood is low because it stays within the tissues’ cells. When the cells are damaged/ destroyed, they release LDH into the bloodstream, causing blood levels to rise. The LDH test is used to identify the location and severity of tissue damage in the body. It is also sometimes to monitor how far certain conditions have progressed (i.e. kidney disease, liver disease and some types of cancer). LDH is also a marker of hypoxia in cells but is not a marker of cancer exclusively as it can be indicative of other conditions e.g. kidney problems. It may also not pick up smaller tumours.
Ca2+ - Blood Calcium (total calcium): This test monitors a range of conditions relating to bones, heart, nerves and kidneys. Calcium is one of the most important minerals in the body (99% of calcium is found in bones with the rest circulating in the blood).
For more information on blood tests, click here.
Tumours found in the bone may be benign (non-cancerous) or malignant (cancerous). To find out whether the tumour is benign or malignant, a biopsy sample must be taken and assessed.
A bone biopsy is a specialist procedure performed at the bone cancer surgical centre. A small sample of the tumour will be taken and examined under a microscope by a histopathologist to see if the patient’s tumour is cancerous, and if so, the subtype of primary bone cancer.
The biopsy may be a ‘needle biopsy’ or an ‘open biopsy’:
Needle Biopsy: a needle is inserted into the tumour to draw out a small amount of tumour tissue (this may be done under local anaesthetic). Often, in order to know exactly where to take the sample from, this test is carried out alongside an X-ray or CT scan to guide the doctor.
Open Biopsy (or surgical biopsy): is used less frequently than a needle biopsy. This form of biopsy is carried out during a small, minor, operation to remove a small piece of tumour while under general anaesthetic. This test tends to be used if a needle biopsy does not provide a diagnosis and the doctor needs to investigate further.
Bone marrow biopsy: On occasions patients with Ewing sarcoma will have a bone marrow biopsy and aspirate taken to see whether the Ewing sarcoma may have spread to the bone marrow. This is not always carried out if the patient has had a PET scan.
Results from a biopsy can take up to two weeks but this may vary.
For more information on bone biopsies, click here.
Questions to ask your medical team at the time of diagnosis
It may be a good idea to write down the questions you would like to ask your doctor, or symptoms you wish to tell them about, before your appointment. You may also benefit from taking a notebook to write down key things to remember, or even better, take a companion who can do this for you.
We have put together a list of questions you may find useful to ask your medical team during your appointments:
- Where can I find more information about my cancer type?
- Do you know the stage of my cancer and has it spread elsewhere in my body?
- How can I manage my symptoms and what shall I do if they become worse?
- Are there any activities I should avoid?
- Which tests will I be having and where will I need to go to have these tests?
- How will I receive the results from my tests? How long could it take for my results to be communicated?
- Will I need to make any changes to my day-to-day life, diet or exercise following my diagnosis?
- Who can I contact if I have any further questions, and will I be able to do so during out-of-office hours?
- Who can I talk to if I am feeling distressed or overwhelmed with my diagnosis?
If you have any further questions about your diagnosis or require any further information, contact our Support & Information Service on 0800 111 4855 or drop us an email. We are here to talk.
The results of the diagnostic tests help your doctor to work out:
- The grade of the cancer- how the cancer looks under a microscope which can be used to predict how the cancer might grow and spread
- The stage of the cancer - how big it is and whether it has spread outside of the bone
Identifying the stage and grade of the cancer enables your doctor to advise on the best course of treatment for you.
The grading and staging of primary bone cancer can seem complicated. There are 2 main systems for staging your primary bone cancer and the grading is slightly different for each system.
Grading Primary Bone Cancer
Doctors grade cancer cells according to how the cells look under a microscope. The grade of the bone cancer gives your specialist a guide to how the cancer may behave. The most common grading system for bone cancer uses two grades:
- Low grade cancers have cells that look slightly abnormal. These cancers usually grow slowly and are less likely to spread.
- High grade cancers have cells that look very abnormal. These cancers are likely to grow more quickly and are more likely to spread.
Staging Primary Bone Cancer
The stage of a cancer tells your doctor how big it is and whether it has spread.
Your doctors and surgeons might use one of 2 different systems to stage your bone cancer. These are:
- the Enneking stages (surgical)
- the TNM stages
They should explain which one they are using and what this means for you.
The Enneking staging system
As well as the size of the tumour and if it has spread, the Enneking staging system also describes the grade of the cancer. It helps your surgeon decide how much bone to remove during surgery.
Stage 1 bone cancer is low-grade. It has not spread beyond the bone. Stage 1 is divided into:
- Stage 1A - the cancer is completely inside the bone it started in. The cancer may be pressing on the bone wall and causing a swelling but it has not grown through it.
- Stage 1B - the caner has grown through the bone wall.
Stage 2 bone cancer is high-grade. It has not spread beyond the bone. Stage 2 is divided into:
- Stage 2A - the cancer is completely inside the bone it started in.
- Stage 2B - the cancer has grown through the bone wall.
Stage 3 bone cancer may be any grade. It has spread to other parts of the body, such as the lungs.
TNM staging system
TNM stands for Tumour, Node and Metastases:
T - describes the size of the tumour. T (tumour) is divided into 3 stages - T1 to T3:
T1 means the tumour is 8cm or less at its widest point.
T2 means the tumour is more than 8cm.
T3 means a high-grade tumour where there is more than one area of cancer in the same bone.
N - describes whether the cancer has spread to lymph nodes. N (nodes) is divided into 2 stages - N0 and N1:
N0 means there are no cancer cells in lymph nodes close to the tumour.
N1 means there are cancer cells in nearby lymph nodes.
M - describes whether the cancer has spread to another part of the body (metastatic or secondary cancer). M (metastases) is divided into 3 stages - M0, M1a and M1b:
M0 means the cancer has not spread to any other part of the body.
M1a means the cancer has spread to your lung.
M1b means the cancer has spread to other areas of the body apart from the lung.
In the TNM system, bone cancer cells are graded from GX to G4:
- GX means the grade cannot be assessed
- Grades 1 and 2 are low grade tumours
- Grades 3 and 4 are high grade tumours
For more detail on each stage of primary bone cancer, please click here.
The NICE Guidance for Improving Outcomes for People with Sarcoma (4) sets out how healthcare services for people with sarcoma should be organised and recommends that anyone with a primary bone cancer should have their treatment supervised by or treated in conjunction with a specialist bone cancer multidisciplinary team (MDT) at a bone cancer surgical centre. Some benign tumours such as giant cell tumours are also treated by bone cancer teams.
You may have recently visited one of the bone cancer surgical centres and are waiting for the results from your diagnostic tests. The bone cancer MDT is a team of different specialist healthcare professionals who, together, decide on the best treatment plan for you.
There are 5 designated MDTs specialising in bone cancer treatment and surgery planning in England. These are based at the 5 bone cancer surgical centres where most bone sarcoma investigations and surgeries should take place. See Bone Cancer Treatment Centres for a list of these hospitals.
The MDT includes:
- Specialist bone cancer surgeons
- Specialist oncologists (doctors who treat cancer with chemotherapy and/or radiotherapy)
- Histopathologists (doctors who specialist in the microscopic study of tissue)
- Radiologists (doctors who assess a cancer by looking at images produced by X-rays or other scans)
- A Clinical Nurse Specialist (CNS) or Advanced Nurse Practitioner (a specialist nurse with knowledge of sarcoma and its treatment. Every person diagnosed with a primary bone cancer or bone tumour should have an allocated nurse (sometimes referred to as 'key worker') who acts as a point of contact for the patient and offers support and advice throughout treatment.
Where will I have my treatment?
The treatment you will receive depends on the type of bone cancer you have been diagnosed with and which part of the body is affected. Your MDT will discuss your case and your doctor or CNS will talk you through your options.
In England and Wales, this will take place at one of the bone cancer surgical centres by a surgeon who is a member of the MDT. In some cases, it may be carried out by a surgeon who specialises in operations on a particular age group e.g. paediatric patients, or the part of the body that is affected i.e. head and neck or the thoracic region. These operations will be carried out by an MDT designated specialist surgeon at a designated hospital.
Chemotherapy and radiotherapy
Chemotherapy and radiotherapy for primary bone cancer can take place in different hospitals around the UK and Republic of Ireland. The delivery of intensive chemotherapy should be administered at specialist sarcoma centres or at another hospital where a patient can be treated by appropriate specialists designated by the MDT. All children and young people diagnosed with cancer are treated in one of the 21 specialist hospital centres across the UK and Ireland. These are known as Principal Treatment Centres.
For patients whose nearest bone cancer treatment centre is far away, a 'shared care' arrangement for acute issues and unexpected admissions with a closer hospital might be set up at the MDT's discretion. The specialist bone cancer treatment centre can be reached for advice on acute presentations and outpatient management.
Radiotherapy for primary bone cancer should also be given at specialist bone cancer treatment centres.
What is the treatment?
The decision for surgery to be performed will be made by the MDT and carried out by an experienced surgeon. The aim of the primary bone cancer/ bone tumour surgery is to completely remove the primary tumour with as little effect to the body as possible so that the tumour can no longer grow or spread.
There are different surgical techniques developed in order to achieve this. These include:
- Surgical resection
If possible, only the tumour will be removed with little to no effect to the body’s function and no need for the bone to be rebuilt.
- Autologous Bone Graft
A piece of healthy bone is taken from elsewhere in the patient’s body to replace the damaged area of bone that has been removed during surgery.
Patients have their tumour removed and the affected area of the limb is rebuilt using tissue that has been donated from someone else.
The area of the bone containing the tumour is removed, treated with radiation to kill any tumour cells, and then safely put back into the patient.
- Metal Implant
During this surgery, the cancer is removed without removing the affected limb. The affected bone is replaced with a metal implant (known as an endoprosthesis) that is custom made for the individual patient. If the cancer is near a joint, the joint can also be replaced. This is a very common technique for primary bone cancers of the arms, legs, shoulder or pelvis and more than 80% of osteosarcomas are treated this way. The procedure may also be referred to as an EPR - endoprosthetic replacement.
The majority of patients will undergo limb-salvage surgery (also called limb-sparing surgery) using the above techniques. However some patients may need to have the limb removed in order to remove the whole tumour. This is called an amputation. An amputation is carried out if the tumour has spread to major blood vessels or nerves in the affected bone, the patient is suffering from a severe infection, there are complications following surgery or if limb-salvage surgery is not possible. Once the area is healed, a prosthetic (artificial) limb can be made specifically for the patient.
Surgery will be planned specifically for each individual patient and aims to remove the tumour while preserving as much of the patient’s pre-surgical, cosmetic appearance and functional capability of the surgical site as possible. If the primary bone cancer has spread elsewhere in the body, for example to the lungs, the patient may require surgery to remove this secondary cancer. This type of surgery is dependent on the size and location of the tumour, and so chemotherapy and radiotherapy may also be used for the management of a secondary tumour.
Additional surgery may be carried out in order to rebuild the affected limb following the tumour’s removal and, particularly if the patient is young and still growing, to replace or expand a prosthesis as the patient grows.
Following surgery, patients may require a lot physiotherapy input. For information regarding the support a patient may receive after surgery, please see our ‘After Treatment’ section.
Chemotherapy is the treatment of cancer using drugs. It may also be referred to as Systemic Anti-Cancer Treatment (SACT). These drugs stop the growth and division of cancer cells or damage the cancer cells’ DNA, causing these cells to die. Additionally, where the cancer cannot be cured, chemotherapy can be used to ease symptoms - which is known as ‘palliative care’.To find out more about how chemotherapy works, click here.
Side-effects can often be unpleasant and include:
- Nausea and vomiting
- Hair loss
- Mouth sores
- An unusual taste in the mouth
- Tiredness (known as fatigue)
How is chemotherapy given?
Chemotherapy is given to cancer cells through the blood stream in order to reach different areas of the body.
The most common ways of getting chemotherapy drugs into the blood include:
- Swallowing a tablet or liquid medicine
- By an injection
- Placing an intravenous (IV) tube into a vein
- By a Hickman Line, Portacath or PICC (Peripherally Inserted Central Catheter). These are long flexible tubes which are put in while the patient is
under general or local anaesthetic. This method is often used in patients having an intensive course of chemotherapy and the tubes stay in throughout treatment to reduce the number of needles and injections needed.
- A Hickman Line: is a tube going directly into the large blood vessels in the chest - A Portacath :is a small chamber of reservoir that that sits under your skin at the end of your central line. The other end of the line sits in a large vein close to your heart - A PICC: is a tube going into a blood vessel just above the elbow and fed up to the large blood vessels in the chest
Please visit Cancer Research UK for more information on PICCs, Hickman Lines and Portacaths.
Chemotherapy is given to patients in ‘cycles’ of treatment, which involve rest periods. Chemotherapy may be given as part of a clinical trial. A clinical trial is a study used to investigate new treatment options or side-effects of treatments. The MDT at the bone cancer centre or specialist sarcoma centre will let patients know about any clinical trials that are available.
For more information on clinical trials please visit our Clinical Trials section of this website.
Neoadjuvant Chemotherapy and Adjuvant Chemotherapy
Chemotherapy may be given before surgery (referred to as neo-adjuvant chemotherapy) or after surgery (referred to as adjuvant chemotherapy), depending on the specific needs of the patient.
- Neoadjuvant Chemotherapy: aims to shrink the tumour and kill any cancer cells that have spread to other areas of the body before the patient has surgery. This creates an easier surgical procedure and allows a more sparing removal of the affected area of the tumour.
- Adjuvant Chemotherapy: is given after surgery and kills any remaining cancer cells in the body. This method ensures the tumour is less likely to return at a later date and greatly improves the cure rate for primary bone cancers.
Stem Cell Transplants
Some forms of primary bone cancer, such as Ewing sarcoma, are treated using a process known as a stem cell transplant. This is usually carried out when receiving very high doses of chemotherapy.
Bone marrow stem cells are immature or baby blood cells that can differentiate into any blood cell type. These stem cells are collected before high dose chemotherapy begins, in a process known as ‘stem cell harvesting’. Before the cells are taken, patients are given a hormone which instructs the stem cells to leave the bone and enter the bloodstream, where they can be ‘harvested’ using a specialised machine.
Once removed, the stem cells are stored and frozen until the high-dose chemotherapy is complete and the stem cells are transplanted back to the patient using a drip. This process replaces the blood cells that are damaged or even destroyed during chemotherapy. It can take a few weeks for the bone marrow to fully recover and for new blood cells to be produced. During this time the patient is at a higher risk of infection and so may be provided with antibiotics to prevent this.
Radiotherapy is used less frequently in the treatment of primary bone cancers in comparison to surgery or chemotherapy. However, it is routinely used after surgery for the treatment of Ewing sarcoma and chordoma. Radiotherapy is occasionally used after surgery for the treatment of osteosarcoma.
Unlike chemotherapy, radiotherapy is a ‘local therapy’ meaning it is designed to treat the tumour directly rather than reach the whole body. Radiotherapy treatment is the use of a high-energy, focused radiation beam (usually an X-ray) which permanently damages the DNA inside of the tumour cells to prevent them from dividing and causing them to die.
Radiotherapy can be used to shrink the tumour before surgery, remove any remaining tumour cells after surgery or it may be used in patients who cannot undergo surgery due to location of their tumour (for example a tumour in the pelvis or spine). Additionally, radiotherapy treatment can provide benefit for patients in relieving bone pain and other symptoms associated with primary bone cancer.
However, this benefit has to be balanced against the possible unpleasant side-effects the patient may experience following radiotherapy. The side-effects experienced will depend on the location the radiation was applied too.
The side-effects of radiation can include:
- Sore skin or a skin reaction
- Tiredness (known as fatigue)
- A dry mouth and difficulty swallowing
- Loss of appetite
Please visit NHS Choices for more information on radiotherapy and the types of radiotherapy a patient may receive.
Proton Beam Therapy
Proton Beam Therapy (PBT) is a type of radiotherapy that uses beams of 'protons' (energised particles), instead of beams of X-rays (photons), that are used in conventional radiotherapy. It is more targeted than conventional radiotherapy so does less damage to the healthy tissue surrounding the tumour and other organs. This is advantageous for some primary bone cancers where the cancer is close to a critical part of the body such as the spinal cord.
For more information, click here.
Questions to ask your medical team during treatment
Being treated for any disease, and in particular cancer, is a very difficult time for patients and their close family and friends. It is important, in order to relieve the feeling of anxiety, for patients to ask all the questions they wish to while meeting with their medical team. Unfortunately, this is often quite difficult, and patients can struggle to gain all the information they would like to during their appointments.
The Bone Cancer Research Trust has put together a list of just a few questions you may find useful to ask your medical team during the treatment of a primary bone cancer:
- What treatment will I receive and why has this treatment plan been decided?
- Are there any likely side-effects to this treatment?
- Will I need medication to control these side-effects?
- How long will my treatment last?
- Where will my treatment take place?
- Will this treatment affect my day-to-day life, such as my ability to attend work/school?
- Will I need follow-up tests to ensure the treatment has worked?
- Am I at risk of any effects later on in my life, and if so, is there anything I can do to prevent these before my treatment begins? (for example, some types of cancer treatment can affect a patients fertility, so this is something that is worth considering before starting your treatment)
- Will I need rehabilitation treatment, and if so how will it be arranged and where will it take place?
- Are there any clinical trials available that I could take part in?
Following treatment, many patients benefit from rehabilitation services. Rehabilitation is a form of therapy that enables patients to regain strength, tackle day-to-day activities and return to normal life as quickly as possible following treatment. This process of therapy is required following many conditions to enable the patient to have the best quality-of-life possible and may begin as little as 24 hours after surgery.
If you are a patient who requires any of these services during your treatment, or further support following your treatment, please contact a member of your medical team to request a referral to a rehabilitation service.
At the start of their rehabilitation patients will be given advice, and possibly some exercises to carry out to improve strength, fitness and the ability to move around independently or in a wheelchair.
The main rehabilitation services include:
- Physiotherapists: help patients return back to an active lifestyle as quickly as possible to restore strength, movement and function
- Occupational Therapists: help patients to complete day-to-day activities in order to regain their independence
- Dieticians: advise on the most appropriate nutrition for patients during and after their treatment
- Psychological Support and Services: psychologists will support patients through any feelings of anxiety or depression to overcome the concerns that often come with a cancer diagnosis
- Local Support Groups: many support groups are organised and run locally. It is best to ask your clinical nurse specialist for information on these local services. The Bone Cancer Research Trust offers a Support & Information Service for all primary bone cancer patients and their families. For more information on our groups and digital support groups, click here. We also run a Freephone Support Line (Mon-Fri 9-5pm) on 0800 111 4855 or you can drop us an email. If your clinical nurse specialist is a long way from where you live, you may find that your local District Nurses or District Children’s Nurses may be more aware of what is available locally.
- Prosthetists: specialists who design and create prostheses (artificial limbs) following amputations to match as closely as possible to the individual patient’s removed limb
- Orthotists: specialists who provide aids for patients following surgery, such as splints, special footwear or other supports
After your treatment has finished, most patients will have regular follow-up appointments. At these appointments you will be examined, asked about any symptoms or side effects you may be having and if you have any concerns. You may also have blood tests, chest X-rays, MRI and CT scans.
These appointments help your doctor or CNS to identify any possible problems early on. How often you have follow-up appointments depends on the type and stage of your cancer, the types of treatment you have had and your individual needs. It also depends on the arrangements of your hospital.
Most patients experience side effects during their treatments which go away or improve after treatment is ended. However, some side effects become permanent or develop months or years after treatment has ended. These are known as late effects of cancer treatment. More is becoming known about late effects as people are living longer after being treated for cancer.
The late effects of cancer treatment vary depending on the type of cancer, the treatment and surgeries and the age of the patient when undergoing treatment.
However, not everyone who has cancer treatment will necessarily experience late effects. Different chemotherapy drugs cause different late effects and late effects of radiotherapy and surgery will affect only the area of the body exposed to them.
If you were treated for cancer as a child, you may be at risk of the same late effects as people who were adults during their cancer treatments and additional late effects as children's tissues, organs and bones grow rapidly and cancer treatment can interfere with this critical time of growth.
As with late effects in adults, late effects from childhood cancer treatment will vary depending on the type of cancer and type of treatment. Additionally, the age at which you were treated may determine which late effects you might experience.
Signs and Symptoms of Late Effects
You can talk to your doctor or CNS about the late effects of your particular treatment or surgery. They should be able to advise you on which late effects you are at risk from. However, the late effects of many cancer treatments still often go undiagnosed.
At your follow-up appointments you will be screened for late effects of your cancer treatment and surgery. It is also an opportunity to talk to your doctor about any signs or symptoms you may be suffering from and to discuss whether these are late effects.
If you were treated for cancer many years ago or are no longer having follow-up appointments, you should talk to your GP about late effects or contact a Late Effect Clinic.
Late Effects Clinics
If you had your cancer treatment as a child you will be monitored for late effects by your oncology team or a late effects clinic specifically for those patients treated as children. For all other cancer patients, they will be screened by their oncologist whilst under their care but are no longer monitored once they are discharged by their oncology/surgical team.
In September 2014, a late effects clinic was established at Nottingham City Hospital.This Late Effects Clinic is a bespoke service which aims to support people suffering with long-term effects from radiotherapy and chemotherapy and offers practical advice and signposting for a range of physical and psychological effects. It offers a wide range of support and guidance regarding late effects such as bowel and bladder problems, infertility, osteoporosis, sexual dysfunction, pain management and psychological issues to name a few. Patients self-refer and it is open to all patients who are a minimum of 6 months out of treatment. There is no upper limit on time from finishing treatment.
There is also a Complex Cancer Late Effects Rehabilitation Service based at The Royal National Hospital for Rheumatic Disease in Bath which is a two-week inpatient rehabilitation service for those patients with complex, chronic late effects. Referral to this service is via the late effect clinic or local pain services.
You may find our webinar on the Late Effects Clinic with radiographer, Emma Hallam helpful.
1. WHO Classification of Tumours Editorial Board. 2020. Soft Tissue and Bone Tumours. Fifth Edition.
2. Gerrand, C, Athanasou, N, Brennan, B, Grimer, R, Judson, I, Morland, B, Peake, D, Seddon, B, and Whelan, J. UK Guidelines for the Management of Bone Sarcomas. Clinical Sarcoma Research. 2016; 6(7). Available at: https://clinicalsarcomaresearch.biomedcentral.com/...
3. National Institute for Health and Clinical Excellence (NICE). Referral guidelines for suspected cancer: recognition and referral (June 2015).
4. National Institute for Health and Clinical Excellence (NICE). Improving Outcomes for People with Sarcoma: The Manual. (March 2006).
5. National Cancer Intelligence Network. 2010. Bone Incidence and Survival Rate in England. Find it here.
6. National Cancer Intelligence Network. 2012. Bone Incidence and Survival Rate in England. Find it here.
7. NHS England. Proton Beam Therapy. 2020. Find it here.
Barr RD, Wunder JS ‘Bone and soft tissue sarcomas are often curable -- but at what cost?’ Cancer. 2009; 115(18): 4046-4054. Available at: http://onlinelibrary.wiley.com/doi/10.1002/cncr.24...
Blunt M. Chemotherapy, Cakes and Cancer (An A to Z survival guide for living with childhood cancer). Published by CLIC Sargent, www.clicsargent.org.uk.
Clarke, R.K, Anatomy and Physiology: Understanding the Human Body, 2005. Jones and Bartlett Publishers Inc, Massachusetts, ISBN 0-7637-4816-1 Available here: https://books.google.co.uk/books?id=4idMNpe04qgC&p...
DiCaprio MR, Friedlaender GE. Malignant Bone Tumors: Limb Sparing Versus Amputation. J Am Acad Orthop Surg. 2003; 11(1): 25-37. Available at: http://www.ncbi.nlm.nih.gov/pubmed/12699369
Eggly S, Harper F, Penner L, Gleason M, Foster T, and Albrecht, T; Variation in Question Asking during Cancer Clinical Interactions: a Potential Source of Disparities in Access to Information. Patient Education and Counselling. 2011; 82(1):63-68. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC294353...
Eroschenko, VP, diFiore’s Atlas of Histology with Functional Corrections, Eleventh Edition, 2008. Lippincott Williams and Wilkins, Baltimore. ISBN-13: 978-0-7817-7057-6. Available at: https://books.google.co.uk/books?id=JZoTjdNSlpQC&p...
Heare T, Hensley MA, Dell'Orfano S. Bone tumors: osteosarcoma and Ewing's sarcoma. Curr Opin Pediatr. 2009; 21(3): 365-72. Available at: http://www.ncbi.nlm.nih.gov/pubmed/19421061
Kleihues P, Sobin L, Fletcher C et al, (eds.) WHO Classification of Tumours: Pathology and Genetics of Tumours of Soft Tissue and Bone, Lyon, France: IARC Press Available at: https://www.iarc.fr/en/publications/pdfs-online/pa...
Langer T, Stöhr W, Bielack S, Paulussen M, Treuner J, Beck JD; German Late Effects Working Group in the German Society of Pediatric Oncology and Hematology. Late effects surveillance system for sarcoma patients. Pediatr Blood Cancer. 2004; 42(4): 373-9.
The Information Standard Disclaimer
Version 2 produced September 2016
Information is currently under review (May 2020)
The authors and reviewers of this information are committed to producing reliable, accurate and up to date content reflecting the best available research evidence, and best clinical practice. We aim to provide unbiased information free from any commercial conflicts of interest. This article is for information only and should not be used for the diagnosis or treatment of medical conditions. We can answer questions about primary bone cancers, including treatments and research but we are unable to offer specific advice about individual patients. If you are worried about any symptoms please consult your doctor.
The Bone Cancer Research Trust shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of the Bone Cancer Research Trust.