About primary bone cancer

Primary bone cancer is the name given to cancer that starts in the bone. It is a rare type of cancer. Primary bone cancer is sometimes called a ‘bone sarcoma’.

Sarcoma is the name given to a cancer that starts in the ‘connective tissue’. This includes bones and their surrounding cartilage, and soft tissues, such as muscle and fat.

Primary bone cancer can develop in any bone in the body. The most common place is in the lower limbs (legs), such as the thigh bone (femur) or shin bone (tibia). This is followed by the hip (pelvis) and the bones of the upper limbs (arm), such as the humerus.

Every year, around 560 people in the UK will be told they have a primary bone cancer. This is the same as around 10 people each week.

Primary bone cancers are different to secondary cancers. Secondary bone cancer is the name given to cancer that has spread to the bones from other parts of the body. They are usually treated and managed very differently to primary bone cancers. For more information, you can look at our secondary bone cancer webpage.

You might hear or read some medical words that do not make sense at first, when learning about primary bone cancer. Our glossary includes these words along with explanations about what they mean.

Primary bone cancer is unusual in that it affects people of all ages. It is seen most often in people aged 10 to 25 years old and over 50 years old.

Males are at a slightly higher risk of developing some types of primary bone cancer than females.

The 4 most common types of primary bone cancer are:

Chondrosarcoma: A primary bone cancer that develops in the cartilage cells. It is:

• the most common type of primary bone cancer in adults
• most common in adults aged between 30 and 60 years old

The most common places it starts is in the long bones like the thigh bone (femur) and arm (humerus), the flat bones especially the hip (pelvis) and ribs. Sometimes, it can start in the spine or base of the skull, but this is less common.

Osteosarcoma: Is the most common type of primary bone cancer in children, teenagers and young adults. Osteosarcoma can affect people of any age, but most cases develop between the ages of 10 and 24 years and in people over 60 years old.

The most common places it starts are the long bones, the thigh bone (femur), followed by the shin bone (tibia) and arm (humerus), then the jaws. In rarer cases, osteosarcoma can start in the skull, the ribs and small bones in the hand and feet.

Ewing sarcoma: Is the second most common type of primary bone cancer in children, teenagers and young adults. Ewing sarcoma is very rare in older people. It mostly affects people aged between 10 and 24 years and most people are younger than 30 years old when diagnosed.

Ewing sarcoma can affect any bone. The most common places it starts are the pelvis, ribs and thigh bone (femur).

Chordoma: Is a rare type of primary bone cancer which starts in the base of the skull or along the spine. It can affect younger people, but mostly affects adults between 50 and 60 years old. It is often slow growing. This means that you may not have any symptoms at first, but symptoms may appear years later.

Other rarer primary bone cancers include:

Spindle Cell Sarcoma of the Bone: Is a soft-tissue tumour which can start in the bone. Spindle cell sarcomas of the bone are often found in the arms, legs and pelvis. They are more common in people over the age of 40 years. Spindle cell sarcomas are treated in a similar way to osteosarcoma.

Adamantinoma: Most commonly starts in the shin bone (tibia) and calf bone (fibula). Adamantinomas can start at any age but are more common in young adults aged 20 to 35 years old.

Angiosarcoma of the Bone: Is an aggressive primary bone cancer. Angiosarcoma develops from the cells that form the blood vessels. It can start in any area of the body, usually in the soft tissues. It most commonly starts in the breasts, heart, skin, liver and bones. When affecting the bones, the most common locations are the long bones like thigh bone (femur), followed by the hip (pelvis), spine and bones in the trunk. It can affect people over 20 years old but is more common in people aged between 60 and 80 years old.

Giant Cell Tumour of the Bone: Is usually non-cancerous (benign). They can spread around the site of the tumour, but very rarely spread to other parts of the body. The most common places they start are the end of long bones of the legs (lower limbs), usually the thigh bone (femur) and shin bone (tibia), or upper arm (humerus) and forearm (radius). Giant cell tumours can also start in the tail bone (sacrum) and the spine (vertebral column). In rare cases, it can affect the flat bones, particularly the hip (pelvis). Few cases of giant cell tumours start in the bones of the hands and feet.

Most giant cell tumours of the bone affect people aged between 20 and 45 years old. Although giant cell tumours of the bone are usually non-cancerous, very rarely, they can turn into cancer.

Ameloblastoma

Ameloblastoma is not a primary bone cancer. However, more information about it can be found on our ameloblastoma webpage.

If you are worried that you might have primary bone cancer or ameloblastoma, talk to your GP (general practitioner).

Symptoms of primary bone cancer can vary depending on its size and where it is in the body. Symptoms may be quite general and can be similar to sports injuries, growing pains, tendonitis and arthritis.

Symptoms may be mild at first and slowly get worse, or they may start suddenly. They also vary for every person. Some people may have just 1 symptom, whereas someone else may have more. The type and extent of symptoms will be different for every person.

Symptoms of primary bone cancer may include:

• bone pain which might be worse at night, happens all the time or stops and starts, is not helped by painkillers and the pain may get worse over time
• a lump or swelling, which may be seen or felt if the tumour is near the skin’s surface. Called ‘a palpable mass’
• problems moving, a limp, stiff limbs or joints, unable to move as normal
• tenderness over the bone or joint
• a broken bone caused by weakening of bone due to a tumour without having had a fall or accident. Called a ‘pathological fracture’

Other possible symptoms may include:

• feeling tired or weary (‘lethargy’ or ‘fatigue’)
• pain with tingling and numbness (‘pins and needles’)
• bruising easily
• weight loss and loss of appetite
• sweats at night
• high temperature (fever)
• feeling breathless

Visit our symptoms of primary bone cancer page for more information.

The exact cause of primary bone cancer or how to stop it happening is not yet known. However, there are things called ‘risk factors’ that can increase your chances of getting it. These risk factors include:

• Genetic conditions or syndromes: There are some genetic risk factors that can increase the risk of getting primary bone cancer. These include:
  • An inherited fault in a gene called ‘p53’ which causes a condition called Li-Fraumeni syndrome. This can increase the risk of getting several cancers, including osteosarcoma. You can access peer support for Li-Fraumeni syndrome on the George Pantziarka TP53 Trust webpage.
  • An inherited fault in a gene called ‘RB1’. This can increase the risk of several cancers, including retinoblastoma and osteosarcoma.
• Non-cancerous (benign) bone conditions: Sometimes, some non-cancerous growths in the bone can develop into bone cancer. Some rare conditions linked with non-cancerous bone growths are Hereditary Multiple Osteochondroma, Ollier’s disease and Maffucci syndrome.
• Previous cancer treatment: Having radiotherapy or chemotherapy in the past can increase your risk of getting primary bone cancer but this is not common.

You cannot catch primary bone cancer. It is not caused by something you have done or not done.

Primary bone cancers are rare, and some GPs (general practitioners) will never come across them. This means they are often misdiagnosed. You might need to visit a doctor more than once before you are sent for more tests (referred) and get a diagnosis.

If a GP is worried about your symptoms, they should follow the National Institute for Clinical Excellence (NICE) guidelines for suspected bone cancer and sarcomas (see below). They should also arrange for an X-ray in 2 planes.

• Children, teenagers and young adults with unexplained bone swelling or bone pain should have an urgent X-ray within 48 hours. If the X-ray shows a possible bone cancer, the GP should refer the person to a specialist within 48 hours.
• Adults should be seen by a specialist within 2 weeks if the results of an X-ray show a possible bone cancer.

If the initial X-ray is normal but symptoms continue, the GP should follow-up and either:

• request another X-ray, or MRI scan. This should be done within 2 weeks for adults and within 48 hours for children, or
• refer the patient to a specialist.

The Bone Cancer Research Trust (BCRT) is trying to find ways to reduce the time between a person noticing symptoms and getting a diagnosis. You can read more about how we are trying to do this in our 2020 Patient Survey Report and 2022 to 2032 Strategy.

If a primary bone cancer or bone tumour is suspected, you will be referred to a specialist bone cancer centre. Doctors will carry out different tests before a diagnosis can be confirmed. These tests may include:

• X-ray, usually carried out first
• Biopsy, where doctors collect a small piece of the tumour. The cells in the tumour are looked at under a microscope and genetic testing may be carried out
• Blood tests
• MRI scan
• PET scan
• CT scan
• Bone scan
• Bone marrow biopsy

Imaging tests, such as X-rays and scans, also help doctors to see the size of the tumour and exactly where in the body it is. Scans also check if the cancer has spread to any other parts of the body. This is known as ‘staging’. Using the test results, the doctor will then decide on a treatment plan.

X-ray

An X-ray is a quick and painless scan. It is commonly used to take pictures of the inside of the body. X-rays can show problems in the bone. For example, X-rays may show swelling around the bone or abnormal bone growth. A chest X-ray is sometimes taken to show whether the cancer has spread to the lungs. You can find more information on X-rays on Cancer Research UK's webpage.

Biopsy

Tumours found in the bone may or may not be cancerous. To find out whether a tumour is not cancerous (benign) or is cancerous (malignant), a biopsy is taken and examined.

A small bit of tumour is taken and examined under a microscope by a pathologist. This helps doctors work out the:

• type of cancer
• stage of cancer
• grade of cancer

This information helps doctors decide the best treatment for you. It usually takes around 2 weeks to get biopsy results.

There are 2 types of biopsy:

• Needle biopsy: A needle is put into the tumour to take out a small piece of tissue. This may be done under local anaesthetic. So that doctors know exactly where to take the sample from, this test is usually done along with an X-ray or CT scan.
• Open biopsy (or surgical biopsy): This is less common than a needle biopsy. It is used when a needle biopsy does not provide a diagnosis on its own. It is a minor operation, where a small piece of tumour is removed under general anaesthetic.

Whole genome sequencing

You may be asked to give a blood and tissue sample for whole genome sequencing, to the National Genomic Research Library. By taking part, it may:

• help your clinical team get answers which could lead to a diagnosis, different treatment, or an opportunity to take part in clinical trials
• help other sarcoma patients and other cancer patients in the future
• help researchers to understand sarcomas better, to improve things for you or others now or, more likely, in the future

To find out more, visit Genomics England’s webpage.

Blood tests

Blood tests will be done regularly during diagnosis and throughout treatment.

They help doctors check that your body is working well. They can also show infections and other issues.

The things doctors may be checking or tests they may carry out on your blood include:

• Blood chemistry - urea and electrolytes: To see how well the kidneys are working
• Full blood count (FBC): To count how many types of blood cells you have
• Red blood cells: They carry oxygen in the blood
• White blood cells: They make up part of your immune system. Doctors will check how many types of white blood cells you have
• Platelets: They make blood clots and scabs
• Haemoglobin: This is found in red blood cells
• Liver function tests (LFTs): To see how well the liver is working
• Erythrocyte Sedimentation Rate (ESR): This is a test which looks for signs of inflammation
• C-Reactive Protein (CRP): If you have raised CRP levels, this can be a sign of inflammation
• Alkaline phosphatase (ALP): This is measured if doctors think you may have osteosarcoma

You can find more information on blood tests on Macmillan's webpage.

MRI (Magnetic Resonance Imaging) scan

An MRI scan uses magnetic fields and radio waves to create detailed images of the inside of the body. IV contrast may be given to you so the inside of the body can be seen in more detail.

Sometimes, people have a total body MRI scan to:

• look for problems in other bones
• see if the original tumour has spread to other parts of the body (metastases).

The scan will be used to stage the tumour and plan the best treatment for you. You can find more information on MRI scans on Cancer Research UK's webpage.

PET (Positron Emission Tomography) scan

A PET scan is used to create 3D images of the whole body. A harmless radioactive substance called a ‘radiotracer’ is injected into your arm. It takes around one hour to spread around your body. Cancer cells take up the radiotracer quicker than other cells. A special camera creates a picture of the radioactivity in the body. The picture is not as detailed as a CT or MRI scan but gives helpful information about the whole body.

PET scans can help show the spread of bone cancer to the lungs, other bones, or other parts of the body. They can also be used to see how well treatment is working.

PET scans are often done with CT scans (PET-CT) and MRI scans (PET- MRI) to build a more detailed picture. The scans happen together in the same machine. You can find more information on PET scans on Cancer Research UK's webpage.

CT (Computerised Tomography) scan

CT scans are sometimes called ‘CAT scans’, meaning ‘Computerised Axial Tomography’. A CT scan is a machine that uses X-rays to create detailed 3D images of the inside of the body. A CT scan helps doctors understand the size and location of the tumour and if it has spread to other parts of the body. Sometimes, a dye called an ‘IV contrast’ is given while you have a CT scan. The dye helps doctors see inside the body more clearly.

These scans help doctors plan the best treatment for you. They also help doctors decide the best way to remove the tumour if surgery is an option.

CT scanning of the lungs shows up any secondary tumours where the cancer may have spread (metastases). You can find more information on CT scans on Cancer Research UK's webpage.

Bone scan

A bone scan is used when a bone problem cannot be seen using X-rays. You will be injected with a small amount of radioactive fluid. This is called a ‘radionuclide’. It is taken up by the bones and seen by a ‘gamma camera’. Areas where the radionuclide is taken up are called a “hot spot'. They look like dark spots on the scan. Hot spots can show where there may be cancer cells or other medical conditions such as arthritis.

You can find more information on bone scans on Cancer Research UK's webpage.

Bone marrow biopsy

Some people with Ewing sarcoma may have a bone marrow biopsy. This helps doctors work out whether the Ewing sarcoma has spread to the bone marrow. You can find more information on bone biopsies on Cancer Research UK's webpage.

Diagnostic tests help your doctor work out the:

• Grade of the cancer (grade 1 to 3): How the cancer cells look under a microscope. This can be used to predict how quickly the cancer might grow and spread.
• Stage of the cancer (stage 1 to 4): How big it is and whether it has spread beyond the original site of the tumour to other parts of the body.

Understanding the stage and grade of the cancer means your doctor can choose the best treatment options for you.

The grading and staging of primary bone cancer can seem complicated. There are 2 main systems for staging primary bone cancer. The grading is slightly different for each system.

Grading

The most common way to grade bone cancer is as follows:

• Low grade cancer (grade 1): Cancer cells look slightly abnormal under a microscope. These cancers usually grow slowly and are less likely to spread.
• High grade cancer (grade 2 to 3): Cancer cells that look very abnormal under a microscope. These cancers are likely to grow and spread more quickly.

Staging

Staging gives information about the tumour, its size, where it is (such as near other organs or blood vessels), if it has spread near the original site or to other parts of the body. Staging guides doctors in choosing the best treatment.

There are 2 different ways to stage cancer. Doctors and surgeons will select 1 of the following ways to stage the cancer:

• TNM (Tumour, Node, Metastases) staging system. This system is used more often.
• Enneking staging system (surgical).

Your doctor should explain which system they are using and what this means for you.

TNM (Tumour, Node and Metastases) staging system

The TNM system looks at:

• Tumour (the size of the tumour)
• Node (has the tumour spread to the lymph nodes)
• Metastases (has the tumour spread to distant sites in the body, for example, the lungs).

Enneking staging system

The Enneking staging system looks at the:

• grade of the tumour (low grade or high grade)
• site of the tumour (within the bone or grown through the bone wall)
• if the tumour has spread to distant sites (metastasis)

This system helps your surgeon plan your surgery.

Cancer Research UK's website has more detail on cancer staging.

When a person has an illness, doctors try to predict how it will affect them. For example, how likely it is that the treatment will work, and how likely it is that the person will be cured. This is called a ‘prognosis’.

Doctors will look at the following things to make a prognosis for primary bone cancer:

• where in the body the tumour is (this can affect which treatments will work best)
• the size of the tumour
• the type of tumour
• the age and general health of the person
• if the primary bone cancer is at the original (primary) site (is local) or has spread to other parts of the body (is metastatic)
• how the tumour responds to treatment

Because everyone is different, doctors can never be sure how primary bone cancer will affect each individual person.

It may help to talk about any feelings of anxiety or concern once you have a diagnosis. Some hospitals offer a ‘Holistic Needs Assessment’. This is where you can have a chat with someone in your medical team who will ask questions about your worries and concerns. It covers all parts of life, not just how the cancer and treatments affect the body. A support plan will be made to help you manage your worries and concerns. You may be offered an assessment around the time of diagnosis, during treatment or after treatment has ended.

If your hospital does not offer a Holistic Needs Assessment, you can still talk to your medical team about any worries or concerns you have. They are there to help you.

Where you will be treated

Where you are treated will depend on a few things, such as the type of primary bone cancer you have, your age and where the cancer is in your body.

You will usually be diagnosed and usually have your surgery at a specialist bone cancer centre. These are specialist centres where a group of people who are experts in bone cancer will discuss and manage your care together. This group of people is called a ‘multi-disciplinary team’ (MDT). You may have to travel a long way to get to a specialist bone cancer centre. Chemotherapy and radiotherapy may take place at a bone cancer centre across the country or a different hospital closer to you. Children and young people are treated in specialist centres.

• In England, there are 5 specialist bone cancer centres: Birmingham, Newcastle, Oswestry, Oxford and Stanmore (North London)
• In Wales, there are no specialist bone cancer centres. People are usually seen at Oswestry or Birmingham
• In Scotland, there are 3 specialist bone cancer centres: Glasgow, Edinburgh and Aberdeen
• In Northern Ireland, there is a specialist bone cancer centre in Belfast.

These specialist bone cancer centres are shown on the map above.

You can find out more detail about specialist bone cancer centre treatment centres in our downloadable resource.

Who will treat you

You will be treated by a team of people who are experts in bone cancer. These people will include oncologists (a doctor who cares for people with cancer), surgeons, nurses including a clinical nurse specialist (CNS), radiologists, social workers, support workers, dieticians, physiotherapists and many others. This group is called a ‘multi-disciplinary team’ (MDT). The MDT will plan and decide on what treatment and care is best for you with your input. They will include you in the decision making.

Each person is given a CNS, sometimes called a ‘key worker’. They are there throughout treatment to give support and listen to questions or worries you may have.

Types of treatment

Your treatment will depend on the type of primary bone cancer you have. To find out more about the type of treatments you may have, visit our information by bone cancer type webpage.

Treatments for primary bone cancer include:

• Surgery
• Radiotherapy (including Proton Beam Therapy)
• Chemotherapy (before and after surgery, or if the cancer comes back)

Surgery

Most people with primary bone cancer will have surgery to remove their tumour.

The type of surgery will depend on:

• where the tumour is
• the size of the tumour
• whether the tumour has grown into nearby tissue or spread to other parts of the body

The surgeon will explain the types of surgery possible for you and the advantages and disadvantages of each option. You can ask as many questions as you like, there is no such thing as a silly question.

The main aim of surgery is to completely remove the tumour with as little effect on the body as possible. This is so that the tumour can no longer grow or spread. Usually, but not always, reconstruction of the missing bone may be required.

Different techniques your surgeon may use are:

• Resection: The affected area of bone is removed along with some healthy bone and tissue around the tumour.
• Autograft: The affected area of bone is removed and replaced with healthy bone and tissue from another area of the body.
• Allograft: The affected area of bone is removed and bone donated by another person is used to reconstruct the bone.
• Irradiation and reimplantation: Diseased bone is removed and treated with radiation outside of the body to destroy cancer cells. The bone is then put back into the body.
• Endoprosthetic replacement: Once the tumour is removed, the area of damaged bone is replaced with a metal implant (an ‘endoprosthesis’). If the tumour is near a joint, the joint may also be replaced. This is common for primary bone cancers of the arms, legs, shoulder or pelvis. Rehabilitation therapy is usually needed afterwards.
• Amputation: Sometimes, surgery is needed to remove the whole limb (arm or leg). This may be because of:
  • the size or location of the tumour
  • if the tumour has spread to major blood vessels or nerves in the affected bone
  • you have had a severe infection after surgery.

If possible, a prosthetic limb will be made for you. To find out more information, please watch our amputation videos.

If the cancer has spread, you may need more surgery to remove other tumours. If surgery is not possible, you may have chemotherapy or radiotherapy instead.

Surgery for primary bone cancer is challenging. You will have rehabilitation (rehab), which may include support from physiotherapists and occupational therapists. This aims to improve your movement and help you get used to a prosthetic limb if you have one.

For more information on support available, visit our Support and Information webpage.

Chemotherapy

Chemotherapy (chemo) is a type of medicine. It travels around the whole body in the bloodstream, which is why it is called a ‘systemic treatment’.

When given before surgery, its aim is to shrink the tumour and kill any cancer cells that could have spread from the original (primary) site to other areas of the body. Chemo may also be given after surgery.

You may have chemo at one of the specialist bone cancer centres or another hospital.

Chemotherapy may be given as part of a clinical trial. You can find out more information in the ‘Clinical trials’ section below.

Chemo before surgery (neoadjuvant chemotherapy)

Chemo given before surgery is called ‘neo-adjuvant chemotherapy’.

You will be given more than one chemo medicine at the same time. This is because there is a better chance of them being effective at attacking and destroying the cancer cells if they are given together.

Your surgeon and oncologist will talk to you about how soon after starting chemo your surgery will happen. It might depend on whether you also need radiotherapy.

Most people have surgery after several cycles of chemo.

Chemo after surgery (adjuvant chemotherapy)

Following the removal of the tumour by surgery, some people will have more chemo to destroy any remaining cancer cells in the body. This is called ‘adjuvant chemotherapy’.

If the tumour has spread to other parts of the body, your oncologist and surgeon may consider removing these secondary tumours by surgery.

Your oncologist can talk to you about the different treatment choices and what is involved. Treatment of cancer should involve patients and doctors working together to find the best care or treatment plan.

Before chemo, the doctors will do tests to see how well the kidneys, heart and ears are working. This is because some medicines like chemo affect these organs. They will also do tests during treatment to check for side effects on these organs.

You can find out more about chemotherapy and its side effects on Cancer Research UK's webpage.

High dose chemotherapy and stem cell transplant

In rare cases, people may be recommended high-dose chemotherapy, followed by a stem cell transplant. This does not often happen in the UK. The stem cell transplant helps to replace blood cells that have been destroyed by the high-dose chemotherapy.

Radiotherapy

Radiotherapy means treating the tumour with high doses of concentrated radiation.

Radiotherapy may be used:

• before surgery to shrink the cancer
• after surgery to destroy any cancer cells that remain in the area after the operation
• instead of surgery if the tumour cannot be removed by surgery
• if there is a risk that surgery would limit how well your body works

If radiotherapy is given after surgery this may be because:

• not all the tumour could be completely removed during surgery
• some of the tumour removed by surgery after neoadjuvant chemotherapy is still alive when looked at under a microscope

Proton Beam Therapy (PBT)

Proton Beam Therapy (PBT) is a type of radiotherapy that delivers the radiation dose to the tumour. This means healthy tissue around the tumour is less likely to be affected by radiotherapy.

PBT is sometimes recommended as it may be better for bone tumours that are not very sensitive to other radiotherapy. It can allow a higher dose of radiotherapy to be used and may reduce the side effects.

People are able to have PBT at The Christie Hospital, Manchester and at University College London Hospital, London. Only a small number of people are likely to benefit from PBT. Your doctor will tell you if your case should be reviewed by an expert panel.

You can find out more information about PBT on NHS England's webpage.

Tests during treatment

You will have some different tests, such as blood, hearing, heart and kidney tests during treatment. These tests are to check if the treatment is suitable and to check for side effects.

The effect of cancer treatment on fertility

Cancer treatments can also affect fertility (the ability to have children). The effect on your fertility will often not be known until after your treatment has finished. It may seem odd to think about fertility right now, but it is worth talking to your doctor, CNS or key worker before treatment starts. There may be ways to preserve your fertility if you want to have children in the future.

Clinical trials help scientists and doctors find out the best ways to treat primary bone cancers. They are important in developing new treatments or improving tests to diagnose and monitor primary bone cancers.

Taking part in these trials can involve different things; from answering a few survey questions, to trying out a new drug or treatment to test if it is better than the usual treatment.

We provide information about clinical trials and what it means to take part in a trial. We also have a list of trials available for bone cancer patients in the UK. You can find this information on our Clinical trials webpage.

Being diagnosed with primary bone cancer can be a stressful and overwhelming time. It is often difficult to get all the information you feel you need from your medical team. You might leave an appointment with some unanswered questions.

Here is a list of some of the questions you may want to ask during your diagnosis, during treatment or after treatment. Do not be afraid to ask any other questions you have. If you do not understand something, ask your doctor or nurse to repeat themselves or ask them to explain it in a different way.

Questions during diagnosis

• Do you know the size of my tumour and where it is?
• How can I manage my symptoms?
• Will I need to make any changes to my day-to-day life, diet or exercise?
• Who can I contact if I have any more questions, and when?
• Who can I talk to if I am feeling overwhelmed?
• Has my cancer spread?
• How might the cancer and cancer treatments affect my fertility?
• What financial help is available?

Questions during treatment

• What treatment will I have and how was this treatment plan decided?
• How long will the treatment last?
• How long will I have to stay in hospital?
• What are the side effects of the treatment and will I need medicines to control these?
• Am I at risk of any side effects later on in my life? Is there anything I can do to stop these from happening?
• Will the treatment affect my day-to-day life, such as going to work or school?
• What happens if the treatment does not work?
• Are there any clinical trials that I can take part in?

Questions after treatment

• Will I need rehab? How will it be arranged and where will it happen?
• Will I need follow-up tests to check the treatment has worked?
• What is available for me in terms of financial help?
• What support is available for me? For example, at school or at work.

Support after treatment

The end of treatment will come as a welcome relief, but it can also be a time of worry and anxiety. You may be worried about the cancer coming back. You may feel lost and alone or be worried about leaving behind the medical team and the support network at the hospital. Your family may also feel like this. These are all normal feelings.

You may like to join a support group or contact other primary bone cancer patients through blogs or on social media.

Our Support and Information Team provide support and information for people affected by primary bone cancer. They can also connect people with others who have experience of primary bone cancer.

Other services are available which offer support, these include:

• Psychological support and services: Psychologists will support people with any worries, or feelings of anxiety or depression.
• Local support groups: Many support groups are organised and run locally. Clinical nurse specialists can usually provide information on local services.
• Charitable organisations: There are lots of charities that provide support and information. See our ‘Other useful organisations’ webpage for details about how other organisations can help.

Follow-up care

When you finish treatment, your doctors will want to monitor you for a long time. This is called ‘follow-up care’. There are European guidelines for follow-up to make sure this is the same for every person.

You will need to attend outpatient hospital visits on a regular basis. How often you visit is different for each person. It might be every 2 to 3 months for the first 2 years, every 6 months for the 3 to 5 years after that and then once a year after that.

At these visits, doctors will check your general health, talk about worries you may have and do important tests to:

• check if the cancer has come back (called ‘relapse’ or ‘recurrence’)
• check for any ‘late effects’ from the cancer treatment (find out more in the ‘Late effects’ section below).

These visits can also be useful to talk about any emotional or practical worries or problems you may have.

You may also have follow-up care with a surgical team. They will look out for surgery-related problems.

In-between visits, it is important you get in touch with your clinical nurse specialist (CNS) or doctor straight away, if you have any problems.

Rehabilitation

During and after treatment, many people benefit from ‘rehabilitation’ or ‘rehab’. This is a form of therapy that helps them regain strength and tackle day-to-day activities.

At the start of rehab, you will be given advice, and maybe some exercises to do. These are to improve your strength, fitness and ability to move around on your own or in a wheelchair.

Rehab services include:

• Physiotherapists: Help people return to an active lifestyle, improving strength, movement and function.
• Occupational therapists: Help improve people’s ability to do everyday tasks.
• Dieticians: Offer advice on what to eat (nutrition) during and after treatment.
• Prosthetists: Design and create prosthetic limbs for people who have had amputations.
• Orthotists: Provide aids for people who have had surgery, such as splints or special footwear.

You may find it helpful to watch Support and Information videos about rehab.

Late effects

Most people will have side effects during treatment. These effects may go away or get better after treatment ends. However, some side effects become permanent or start months or years after treatment ends. They are called ‘late effects’ of cancer treatment. We are learning more about late effects as time goes on.

Late effects can vary in each person, since it depends on the:

• type of cancer
• treatments and surgeries you have had
• your age when you had treatment.

Most people will get late effects if they have cancer treatment, but not everyone will.

Reporting late effects to your doctor

Late effects can be managed more easily if noticed early. Talk to your doctor or clinical nurse specialist (CNS) about the possible late effects of your cancer treatment. They should be able to tell you which late effects you are at risk of getting.

At your follow-up care visits in hospital, your doctor will monitor you for late effects. Tell your doctor if you have any new or different symptoms.

Late effects services

Some people will visit “Late Effects” clinics at least 5 years after their treatment has ended. Late effects services have been set-up in London, Nottingham, Derby, Sheffield, Cheltenham, Taunton and Glasgow to support people with late effects. There is also a Pain-related Complex Cancer Late Effects Rehabilitation Service (CCLERS) in Bath. Talk to your doctor about whether it is suitable for you to be referred to a late effects service.

You may also find our webinar on the Late Effects Clinic with radiographer, Emma Hallam, helpful.

Scanxiety

Scan anxiety, or ‘scanxiety’, is the anxiety, worry, or fear you might feel in the lead up to a scan or scan results. These feelings, and any others that might come up, are normal.

During the time between your outpatient visits, you may feel unable to plan for the future, 1 year, or even 3 months ahead. Try to not let cancer rule your life. It might help to have medium and long-term goals.

You may find Maggie's information on the fear of cancer returning helpful.

If the primary bone cancer comes back

Sadly, primary bone cancer can come back in some people. If the cancer does return, it may feel like the bottom has fallen out of your world. However, there are treatments that you can be given.

You may be given a different mix of chemo medicines. The treatment may be more aggressive than before, meaning that higher doses are used. You may need more surgery and, or radiotherapy. You may be asked to take part in a clinical trial. Everyone is different and treatments will depend on each person .

Your medical team will talk you through the treatment options in detail.

Advanced primary bone cancer

Your doctor may have told you that your cancer can no longer be cured. The focus now is to make you comfortable and give you as much time as possible with your loved ones. Your hospital team may talk about palliative care and ways to manage your pain. They may also talk to you about hospice care. You can ask the team to help direct you to a local hospice or you might like to search for one yourself.

You can find more information on this and coping with your emotions by contacting our Support and Information Team.

The Bone Cancer Research Trust's information has been created using only peer reviewed clinical and scientific publications, reviews, case studies and reference books. Peer review is when the work of one scientist or doctor is checked by other experts in the same field. This helps make sure the study data is 'reliable'.

If you are interested in reading more, below is a list of key references used to compile our information about primary bone cancer.

For a full list of references and further reading, or for more information, contact our Support and Information Service. You can also visit our Request Information Materials page to order printed resources.

• WHO Classification of Tumours Editorial Board. Soft Tissue and Bone Tumours. Fifth Edition. Lyon: International Agency for Research on Cancer; 2020. ISBN: 978-92-832-4502-5
• Gerrand, C., Amary, F., Anwar, H.A. et al. UK guidelines for the management of bone sarcomas. Br J Cancer (2024). https://doi.org/10.1038/s41416-024-02868-4. And references cited therein.
• Strauss, SJ, Frezza, AM, Abecassis, N, Bajpai, J, Bauer, S, Biagni, R et al. On behalf of the ESMO Guidelines Committee, EURACAN, GENTURIS and ERN Paedcan. Bone sarcomas: ESMO–EURACAN–GENTURIS–ERN PaedCan Clinical Practice Guideline for diagnosis, treatment and follow-up. Annals of Oncology. 2021 Dec 1; 32(12):1520-1536. https://doi.org/10.1016/j.annonc.2021.08.1995.
• National Institute for Health and Clinical Excellence (NICE). Referral guidelines for suspected cancer: recognition and referral [NG12] Published 23 June 2015, last updated 02 October 2023 [accessed 2023 Dec 11]. Available from: https://www.nice.org.uk/guidance/ng12..
• National Institute for Health and Clinical Excellence (NICE). Improving Outcomes for People with Sarcoma. Cancer service guideline [CSG9]. Published 20 March 2006, checked in March 2014 [accessed 2023 Dec 11] Available from: https://www.nice.org.uk/guidance/csg9/resources/improving-outcomes-for-people-with-sarcoma-update-pdf-773381485.
• National Institute for Health and Clinical Excellence (NICE). Bone and soft tissue sarcoma - recognition and referral. Last revised in August 2020 [accessed 2023 Dec 11]. Available from: https://cks.nice.org.uk/topics/bone-soft-tissue-sarcoma-recognition-referral/.
• Francis, M. et al. Bone Sarcoma Incidence and Survival, tumours diagnosed between 1985 and 2009, England. Report Number R12/05. National Cancer Registration Service. 2012 [accessed 2023 Dec 11]. Available from: http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/sarcomas/#.
• Francis, M. Dennis, N. Lawrence, G. et al. Bone and Soft Tissue Sarcomas UK Incidence and Survival: 1996 to 2010. Version 2. National Cancer Registration Service. 2013 [accessed 2023 Dec 11]. Available from: http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/sarcomas/.
• National Cancer Registration and Analysis Service. Children, teenagers, and young adults UK cancer statistics report 2021 [cited 2023 Dec 11]. Available from: http://www.ncin.org.uk/cancer_type_and_topic_speci...
• National Cancer Registration and Analysis Service. CancerData [internet]; 2021 [cited 2023 Dec 11] Available from: https://www.cancerdata.nhs.uk/.
• NHS England. Proton Beam Therapy [internet]; 2022 [accessed 2023 Dec 11]. Available from: https://www.england.nhs.uk/commissioning/spec-services/highly-spec-services/pbt/.
• Enneking, WF. Spanier, SS. Goodman, MA. A system for the surgical staging of musculoskeletal sarcoma. Clinical Orthopaedics and Related Research (1976-2007). 1980 Nov 1;153:106-20 [accessed 2023 Dec 11].

We are always trying to improve our health information. If you would like to share any thoughts about the information on this webpage or any other BCRT information you have seen, please get in touch. We would love to hear from you.

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