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 view our 'Downloadable Information Materials' page to view all of our fact sheets and our 'Overview of the Disease, Diagnosis and Treatment'.
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.
Cancer develops when the body’s cells behave in an abnormal way and grow uncontrollably to form a mass (or lump) of cells known as a tumour. The site at which a tumour forms is known as the ‘primary tumour site’.
Primary bone cancer can develop in any bone in the body, though over a third of cases (34%) are found in the long bones of the lower body - such as the thigh (femur) or shin bone (tibia).
If a cancer were to spread from its primary tumour site and form a tumour in another area of the body, this would be referred to as a ‘secondary tumour site’ or a ‘metastatic site’.
PRIMARY BONE CANCER IS THE NAME GIVEN TO A CANCER THAT ORIGINATES IN A CELL FOUND IN THE BONE
Primary bone cancer, also referred to as a bone sarcoma, is very rare and makes up approximately 0.2% of all cancers diagnosed in the UK(1,2). However, some tumours of the bone can be benign (non-cancerous) and these are not included in this statistic.
For more information on what cancer is or how cancer develops, please visit Cancer Research UK
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)
As the bone marrow is separate from the bone, cancers that begin in the bone marrow (such as myeloma, leukaemia and lymphoma) are not primary bone cancers.
For more information on cancer types of the bone marrow please visit Cancer Research UK
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 common forms of this cancer are known to affect certain age groups:
- Osteosarcoma and Ewing sarcoma most commonly affect children and young adults aged 10-25 years old.
- 70% of Ewing sarcoma cases are in those under 30 years of age and this form of primary bone cancer makes up approximately 1.5% of all childhood cancers.
- Chondrosarcoma and Chordoma most commonly affect adults over the age of 50 years old.
Every year, around 380 people in England alone, and around 35 people in Republic of Ireland, will develop primary bone cancer(2). In 2015, there were a reported 531 cases of primary bone cancer in the UK and a larger 3,300 cases in the U.S.A.
When combining known primary bone cancer incidences, there are approximately 51,658 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.
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(2).
The most common symptoms of primary bone cancer are:
- Bone pain
- This can be constant (there all the time) or intermittent (comes and goes). Painkillers may not help and the pain can be worse at night
- The area may be tender to touch
- A lump or swelling may be seen, or felt, if the tumour is near the surface of the body. In other places (e.g. the pelvis) a lump or swelling may not be visible
- Problems with mobility such as stiff joints or reduced movement
- Development of an unexplained limp
- Easy bruising
- Weight loss
- Loss of muscle tone
- Fracturing of the bone may occur due to the tumour weakening the area - this is known as a pathological fracture
Due to the rarity of primary bone cancer and the symptoms being easily – and often – mistaken for other conditions (such as sports injuries, growing pains or arthritis), it is very difficult to diagnose these cancers. Many GPs and healthcare professionals are unfamiliar with primary bone cancer and have never treated a case. Additionally, many patients are unaware of the possibility of cancer and suffer from pain and other symptoms for a long time before going to see their doctor. These factors combined mean that it can take patients a long time to be seen by the appropriate specialist and start their treatment.
This emphasises the need for an increased awareness of primary bone cancer in order to reduce the time taken for a patient to be diagnosed and begin their treatment - early diagnosis is a crucial factor in improving outcomes for patients.
The Bone Cancer Research Trust is constantly trying to find ways to make the time between the onset of symptoms and receiving a diagnosis much shorter. This is not a simple task and currently there is only a small amount of research on the subject. We carried out a national survey to show how primary bone cancer affects people’s everyday lives in order to raise awareness of this problem. You can read about the experiences of patients being diagnosed with primary bone cancer in our ‘Living with, and beyond, primary bone cancer’ report.
Additionally, the Bone Cancer Research Trust participated in a national project to look at ways of reducing the length of time it takes to reach a diagnosis. We have partnered with the Royal College of General Practitioners to provide a GP online e-learning module to help GPs diagnose primary bone cancers. Furthermore, we fund a project known as the ‘National Sarcoma Awareness project’, which provides top young doctors the opportunity to carry out a work placement in a specialist sarcoma centre and to complete an online module aiming to improve their knowledge and interest in the field of sarcoma.
Although there are various types of primary bone cancer, and the diagnostic tests may differ for each patient, this section will discuss the main tests and procedures that take place in order to diagnose primary bone cancer.
This section will discuss:
- Going to the GP
- Going to the bone cancer centre
- The team involved in diagnosing primary bone cancer
- What tests are carried out to diagnose primary bone cancer
- X-Rays, MRI, PET, CT, Bone Scan
- Blood Tests
- Useful questions to ask your medical team during your diagnosis
GOING TO THE GP
A diagnosis of primary bone cancer usually begins with a trip to a General Practitioner (GP), or to the local hospital emergency department (A&E), to discuss any worrying symptoms that a patient is experiencing. This can result in the patient being referred for further testing, or for a ‘second opinion’ by another doctor. Unfortunately, as primary bone cancers are very rare and many GPs have never encountered or treated a case before, it is quite common for patients to visit their GP 3 or 4 times before receiving a medical referral.
If a doctor is concerned about a patient’s symptoms there are national guidelines (set out by The National Institute for Clinical Excellence [NICE]) that they should follow(3).
These guidelines are:
- If a healthcare professional has concerns about the interpretation of a patient’s symptoms, a discussion with the local specialist should be considered.
- A patient who presents with symptoms suggesting bone cancer should be referred to a team specialising in the management of bone cancer, or to a recognised bone cancer centre depending on local arrangements.
- Patients with increasing, unexplained or persistent bone pain, tenderness, particularly pain at rest (and especially if not in the joint), or an unexplained limp should be investigated by the primary healthcare professional urgently.
- A patient with a suspected spontaneous fracture should be referred for an immediate X-ray.
The guidelines following an X-ray are:
- If an X-ray indicates that bone cancer is a possibility, an urgent referral to a Bone Cancer Centre should be made
- If the X-ray is normal but symptoms persist, the patient should be followed up and/or a repeat X-ray or bone scan should be carried out or a referral requested.
GOING TO THE BONE CANCER CENTRE
Patients are referred to a ‘Bone Cancer Centre’ by their GP for further diagnostic tests, and if required, treatment. The Bone Cancer Centres have many experienced and specialised staff making up a multi-disciplinary team (MDT) of surgeons, oncologist, pathologists and cancer specialist nurses.
When patients arrive at their Bone Cancer Centre, more tests will be carried out to show how well organs such as the kidneys, heart, liver and ears are working, before treatment can begin. Tests may include blood tests, echocardiograms (heart) and an audiogram (hearing test).
The measurements from these tests show doctors if these organs are working normally. This gives the doctors a 'baseline' to compare how well these organs are working as your treatment goes on. The drugs used to treat primary bone cancer can affect these organs, so the tests are repeated during treatment. The measurements taken from the repeated tests are compared to the baseline; this helps the doctors to see if the organs are being affected.
There are specialist Bone Cancer Centres around the UK and Ireland:
There are five centres in England
- Birmingham - The Royal Orthopaedic Hospital
- Newcastle - North of England Bone and Soft Tissue Tumour Service, Newcastle upon Tyne Hospitals NHS Foundation Trust
- Oswestry - The Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust
- Oxford - Nuffield Orthopaedic Centre NHS Trust
- Stanmore - Royal National Orthopaedic Hospital
Patients in Wales travel to Oswestry or Birmingham centres.
There are three centres in Scotland
Republic of Ireland
There are no specific Bone Cancer Centres in the Republic of Ireland at the moment. Patients are referred to specialist hospitals in Dublin or Cork for further tests or treatment
Patients are seen in Belfast.
For patients whose nearest specialist hospital is too far away, a ‘shared care’ arrangement with a closer hospital may be set up. This means that the specialist hospital recommends a treatment plan and this treatment is carried out at a hospital closer to home for the patient.
Please view our PDF file here for a full list of all the centres or specialist hospitals in the UK and Ireland.
If you require more information on the specialist Bone Cancer Centres in the UK and Ireland please contact us.
THE TEAM INVOLVED IN DIAGNOSING PRIMARY BONE CANCER
Specialists in many different areas of medicine at the Bone Cancer Centres, hospitals and ‘Bone Cancer Centres’ in the UK work together as a multidisciplinary team (MDT) to diagnose a patient’s condition.
The MDT which cares for a patient during the diagnostic process and treatment of primary bone cancer will include:
- Specialist bone cancer surgeons
- Bone cancer surgeons carry out the surgery needed in the treatment of primary bone cancer and are specialised in this area of surgery
- Specialist oncologists
- Oncologists are doctors who look after people with cancer.
- Pathologists are doctors who specialise in diagnosing and studying diseases using laboratory techniques
- Radiologists are doctors who assess a cancer by looking at the images produced by X-rays or other scans such as an MRI
- Clinical Nurse Specialist or Advanced Nurse Practitioner
- Clinical nurse specialists and advanced nurse practitioners are nurses who specialise in a certain area and offer support and advice. Every person diagnosed with a bone cancer should have a ‘named nurse’ who the patient has direct contact with and can talk to if they have any questions or concerns.
- Social workers and psychologists - who will help with patients' emotional, social and educational needs.
- Dieticians - who will help ensure a patient is receiving all the nutrients and dietary needs they require during treatment and recovery
WHAT TESTS ARE CARRIED OUT TO DIAGNOSE PRIMARY BONE CANCER?
When a patient visits a Bone Cancer Centre or specialist hospital, they will undergo further tests to confirm if they have a primary bone cancer and, if so, the type of tumour it is. Many tests can be carried out, and they may differ from patient to patient and between the different tumour types.
The main tests include:
- CT scan
- MRI scan
- PET scan
- Isotope Bone Scan
- Blood tests
- Bone biopsy
For more information on the diagnosis of specific tumour types please refer to the relevant primary bone cancer type section of this website.
An X-Ray is a picture (known as a radiograph) that is taken of the bone. This is likely to be the first test used to diagnose bone cancer. The radiographs 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.
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. This scan helps doctors to understand more detail on 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.
The patient will be required to lie on a bed that moves through a large doughnut-shaped machine in order to carry out the CT scan. Before having this scan patients may be injected with a ‘contrast medium’. A contrast medium is a harmless substance that improves the image of certain tissues to help the radiologists make a better assessment of the scan results.
Additional CT scans of the chest can show if the cancer has spread to the lungs.
Please visit NHS Choices for more information on CT Scans
MRI stands for ‘magnetic resonance imaging’. This type of scan is similar to a CT scan 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.
Like a CT scan, the patient lies very still on a bed during the MRI scan and may have a contrast medium injection shortly before the scan takes place to allow a more detailed image to be taken. This scan can be quite noisy, but is completely painless and you may be able to play your own music during this scan to overcome this noise.
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 individual patients.
Please visit NHS Choices for more information on MRI Scans
PET (Positron Emission Tomography) scans are increasingly being used to diagnose cancer. These scans examine the whole body rather than one specific area. This allows doctors to determine the location and the 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 much more rapidly than healthy cells, they usually take up the radiotracer much more 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.
Please visit NHS Choices for more information on PET Scans
ISOTOPE BONE SCAN
Bone scans are used to look for abnormalities in the bones. Patients who are suspected to have a 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.
Please visit Cancer Research UK for more information on bone scans
Blood tests can be carried out to assess the general health of a patient and require taking a small sample of blood using a needle. 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&E’s): 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 (AP): 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
- Liver Function Tests (LFT): liver function tests look at numerous substances in the blood at once to see if the patient’s liver is functioning correctly. These tests are useful to see if there are any side-effects from the cancer treatment
BIOPSY OF THE BONE
Tumours found in the bone may be benign (non-cancerous). In order to find out whether the tumour is benign or cancerous, a biopsy sample must be taken and assessed.
A bone biopsy is a specialist procedure performed in Bone Cancer Centres after a discussion with a bone tumour specialist. A small sample of the tumour will be taken and examined by a pathologist under a microscope to see if the patient’s tumour is cancerous or not.
The biopsy being taken 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 wish to investigate further.
QUESTIONS TO ASK YOUR MEDICAL TEAM DURING YOUR DIAGNOSIS
Being diagnosed with a disease, or even visiting the GP for a check-up, can be a stressful time. It is often difficult to get all the information you would like when visiting the doctor, or other healthcare professional, and it is very common for patients to leave appointments with some unanswered questions. It can be particularly difficult while you are waiting to find out if there is a cancerous tumour or not.
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 the appointment to overcome this and make the most of your visit. Patients may also benefit from taking a notebook to write down key things to remember, or even better, take a companion with you who can do this for you.
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 diagnosis of a primary bone cancer. Additionally, you can find a list of questions you may wish to ask during the treatment of a primary bone cancer here.
- 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 to help my symptoms?
- Where will I need to go to have further tests?
- How will I receive the results from my tests?
- 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?
The grade and stage of cancer is worked out during a patient’s diagnosis and indicates the correct management and treatment plan for the cancer.
Cancer Grade: histological grading is an attempt to predict the biological behaviour of a malignant tumour based on tumour cells appearance under a microscope.
Primary bone cancers are graded as G0, G1 or G2:
- G0 is a NON-CANCEROUS (benign) tumour
- G1 is a low grade tumour.
These tumours are slow-growing and unlikely to spread elsewhere in the body. The tumour cells may look similar to healthy cells under the microscope.
- G2 is a HIGH GRADE tumour.
These tumours grow rapidly and are more likely to spread elsewhere in the body or return at a later date. The tumour cells look very abnormal under the microscope.
Cancer Stage: the stage of the cancer tells the doctor how big the tumour is and whether or not it has spread to neighbouring tissues or other areas of the body.
The stages of primary bone cancer are 0, 1A, 1B, 2A, 2B and 3
For more detail on each stage of primary bone cancer please visit Cancer Research UK
Patients will visit their nearest ‘Bone Cancer Centre’ for diagnostic tests to confirm if they are suffering from a primary bone cancer, patients will also visit the Bone Cancer Centre to receive their treatment.
For more information on your nearest Bone Cancer Centre please click here.
To view the UK Guidelines on the management of primary bone cancer, which was produced by the British Sarcoma Group and provides an overview and reference point for the standard of care for bone cancer patients, please click here to access the paper. The information within this document was used to produce the information provided by the Bone Cancer Research Trust.
HOW IS A TREATMENT PLAN DECIDED?
Specialists from many different areas of the hospital, or Bone Cancer Centre, will make the decision on the best treatment plan for each specific patient as a multi-disciplinary team (MDT). The main treatments a primary bone cancer patient will undergo are surgery, chemotherapy and radiotherapy.
Each patient, and tumour type, will require different treatments tailored to the individual patient. This section aims to provide a brief overview of the main treatment methods used for primary bone cancer patients.
For more information on the treatment methods for specific tumour types please refer to the relevant primary bone cancer type section of this website.
The decision for a primary bone cancer patient to have surgery will be made by a specialised multi-disciplinary team (MDT) for each individual patient and carried out by an experienced surgeon. Surgery is carried out with the aim 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 prosthesis) that is usually measured and made specifically 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.
These types of surgery, which remove the tumour without removing the limb, are known as limb-sparing or limb-salvaging surgery, of which 90-95% of patients will undergo. This type of surgery is effective for most patients, however less than 10% of 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 bad infection, there were complications following surgery or if limb-sparing surgery was 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 normal 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 very 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.
Patients may receive further surgery at a later date if the primary bone cancer returns in the bones or in secondary sites such as the lungs. 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 bone or joint surgery, patients require a lot of support and physiotherapy to get going again. For information regarding the support a patient may receive after surgery please see our later section on support after treatment.
Cancer Research UK provide more information on the side-effects a patient may experience following reconstructive limb surgery and how the ‘Disability Discrimination Act’ can support patients in work, school and day to day life following surgery.
Chemotherapy, often referred to as ‘chemo’, is the name given to the treatment of cancer using drugs. 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 patients’ symptoms - which is known as ‘palliative care’.
In order to be effective, chemotherapy drugs must take advantage of the difference between cancer cells and normal cells. Cancer cells divide much more rapidly than normal cells and therefore chemotherapy drugs target the rapid cell division process of the cancer cells. Different chemotherapy drugs target slightly different parts of the cells’ division machinery, and so chemotherapy is often used as a mix of multiple drugs, referred to as ‘combination therapy’ in order to target the tumour more effectively. Most healthy cells do not divide very quickly, however some types do, such as the hair follicle cells, reproductive cells, bone marrow cells, and the cells lining the digestive system. This means chemotherapy drugs can also affect these healthy, quick-dividing, cells and this is what causes the side-effects that some patients suffer from during chemotherapy treatment.
Side-effects can be often be unpleasant and include:
- Hair loss
- Mouth sore
- An unusual taste in the mouth
- Tiredness (known as fatigue).
Dealing with Chemotherapy Side-Effects
Each patient is different and so may not experience the same side effects or may not get them as severely as others may.
- Hair Loss:
This is the side effect most people are aware of and it can begin a few days or a few weeks into treatment. Everyone copes differently with this side-effect, but the best thing is to stay positive and remember that it will grow back. Talking to your nurse about this more may help
- Nausea and Vomiting:
Doctors can provide anti-sickness tablets and it is best to avoid food that is greasy or strongly flavoured.
This is the most common side-effect of chemotherapy and is the feeling of extreme tiredness and a lack of energy. Doctors can prescribe medication to help patients deal with fatigue and research suggests remaining active can help
- Low number of white blood cell:
This is known as neutropenia. White blood cells are important in fighting infections and can be lowered during chemotherapy. To monitor this, patients may undergo numerous blood tests before, during and after chemotherapy.
- Mouth Sores:
Mouth ulcers are a major symptom of chemotherapy. Doctors can provide mouthwash and gels that can help and sucking ice cubes or eating ice cream can be soothing
- Taste Changes:
Patients may experience the taste of metal in their mouth or that foods suddenly taste bitter or salty. This will stop as soon as the chemotherapy does. It may help to use plastic cutlery or add herbs and spices to food to help with the flavour
- Weight Loss:
During chemotherapy patient may lose their appetite and begin to lose weight. Eating a nutritious diet and a variety of foods is important to help keep a stable weight.
For more information and advice on dealing with the side-effects associated with chemotherapy please see the following websites:
A former osteosarcoma patient, Megan Blunt, has written a book full of tips on how to cope with chemotherapy. This
book called Chemotherapy, Cakes and Cancer is available to download as a PDF published by CLIC Sargent.
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 Central Line 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 Central Line: is a tube going directly into the large blood vessels in the chest
- 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
Chemotherapy is given to patients in ‘cycles’ of treatment, which involve rest periods. Patients tend to have the chemotherapy drug, or combination of drugs, over 3-4 days before having a rest period of around 2-3 weeks to allow the body to recover. This is classed as one cycle, and will be repeated over a set amount of time. Primary bone cancer has a long chemotherapy treatment duration in comparison to other cancers. Patients tend to have up to 12 weeks of chemotherapy before surgery and a further 30 weeks afterwards; though the specific duration and drugs used differ between each patient - with the drug Mifamurtide being used for up to 36 weeks after surgery.
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 multi-disciplinary team at the bone cancer centre or specialist hospital 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.
Neo-adjuvant 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.
- Neo-Adjuvant 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 TRANSPLANT
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
COMPLEMENTARY OR ALTERNATIVE MEDICINE (CAM)
Conventional medicines are those that are prescribed by your doctor, for example chemotherapy or radiotherapy. Some patients may choose to stop taking these conventional medicines or they may not wish to begin their treatment using these medicines for many different reasons. Instead, some patients turn to complementary or alternative medicines – which are referred to as CAMs. CAMs may also be referred to as traditional medicines, unconventional medicines or integrated healthcare/medicine.
Although some patients may find these very beneficial, alternative medicines have not gone through the very careful testing (in the form of clinical trials) that conventional medicines do, and therefore cannot be confirmed as safe or effective. Additionally, a positive benefit using CAMs may be due to the ‘placebo effect’; an effect in which the patient expects to feel better and so they witness their symptoms reduce.
For these reasons it is crucial that any patient thinking about using complimentary or alternative medicines (CAMs) should firstly consult their medical team.
You can read more about CAMs and the placebo effect on NHS Choices.
Although complementary and alternative medicines are often referred to as ‘CAMs’ for short, they do not mean exactly the same thing and there are distinct differences between the two.
- Alternative Medicines
Are used instead of conventional treatment and are quite commonly advertised on the internet with claims that are not backed with evidence - these medicines come with a high level of risk.
- Complementary Medicines
Are used alongside conventional treatments in order to help relieve symptoms or relax the patient, with the aim to provide a better quality of life.
The most popular complementary medicines are either natural products or mind and body practices, including:
- Breathing exercises
- Massage therapy
- Herbal products
- Vitamins or special diets
- Spiritual healing
Please visit NHS Choices for more information on complementary and alternative medicines.
QUESTIONS TO ASK YOUR MEDICAL TEAM DURING YOUR 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. Additionally, you can find a list of questions you may wish to ask during your diagnosis here.
- 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, or further support following your treatment, please contact a member of your medical team to request a referral to a rehabilitation service. These services are available both during and after treatment, so please don’t hesitate to ask about these at your earliest convenience.
At the start of rehab patients will be given advice, and possibly some exercise 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 ran locally. It is best to ask your clinical nurse specialist for information on these local services. 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 finishing treatment, many patients will require follow-up care. Follow-up care at the hospital will allow healthcare professionals to keep an eye on a patient’s general health and ensure the patient hasn’t suffered any ‘late effects’ from their treatment. Late effects of treatment can occur months, or even years, after a patient’s treatment and include effects on the patient’s kidney function, fertility or risk of developing a secondary cancer
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The Information Standard Disclaimer
Version 2 produced September 2016
Information will be reviewed in 2019
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.