Osteosarcoma

Osteosarcoma is a type of primary bone cancer. This means that it starts in the bones. In very rare cases, osteosarcoma may start in soft tissue, like the muscles. This is called ‘extraskeletal osteosarcoma’ or ‘extraosseous osteosarcoma’.

Osteosarcoma is:

• the second most common type of primary bone cancer
• the most common type of primary bone cancer in children and young people

In osteosarcoma, bone cells become abnormal because of genetic faults or ‘mutations’. They grow in an uncontrolled and disorganised way, forming a lump called a ‘tumour’.

Osteosarcoma can start in any bone of the body. The skeleton picture below shows the main places where it may start.

• About 70 in every 100 cases of osteosarcoma start in the long bones of the arms and legs (limbs).
• The most common places are: the lower thigh bone nearest the knee (distal femur), the upper shin bone nearest the knee (proximal tibia) and the upper arm bone nearest the shoulder (proximal humerus).
• Osteosarcoma can also start in other bones such as the jaw, skull, pelvis, spine, sternum, ribs, lower arm and hand.

Parts of the body osteosarcoma affects

Osteosarcoma is more common in the arms and legs in people up to 40 years of age. After this age, it is more common in the bones of the pelvis.

Osteosarcoma in the bones of the skull and jaw is more common in people aged between 30 and 60 years old, compared to other age groups.

Around 1 in every 100 osteosarcomas start in more than one bone at the same time. This is called ‘multi-focal osteosarcoma’.

There are different types of osteosarcoma. See ‘Types of osteosarcoma’ for more information.

When cancer spreads to another part of the body, it is called ‘secondary cancer’. If osteosarcoma does spread, the most common part of the body it spreads to is the lungs. This is called ‘pulmonary metastasis’. It can also spread to other places in the body, including other bones.

Osteosarcoma is the most common type of primary bone cancer in children and young people.

Although it can affect people of any age, osteosarcoma mostly affects people between the ages of 10 to 24 years old and over 60 years old. In particular, it affects people aged between 15 and 19 years old.

• Each year in the UK around 160 people are diagnosed with osteosarcoma.
• Osteosarcoma is slightly more common in males than females.

There are different symptoms of osteosarcoma. Doctors may call these ‘clinical signs’ or talk about 'presentation'.

Common symptoms of osteosarcoma include:

• bone pain which might be worse at night, happens all the time or stops and starts, is not helped by painkillers and 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
• bruising easily
• 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:

• high temperature (fever)
• feeling tired or weary (‘lethargy’ or ‘fatigue’)
• weight loss and loss of appetite
• if the tumour is in the ribs, feeling breathless
• if the tumour is close to the spine or nerves, pain with tingling and numbness (‘pins and needles’)

Not everyone will have the same symptoms and they can affect people in different ways. They may be mild at first and slowly progress, or they may start suddenly. Some people have symptoms that disappear for a while and then suddenly return.

Sometimes people have symptoms for weeks or months before they are diagnosed. This may be because the symptoms of osteosarcoma are not specific. They can be similar to other more common, non-cancerous conditions.

Many people struggle to get a correct diagnosis when they first see a doctor. Because lots of people have pain that starts and stops, doctors can think the cause of the pain or other symptoms is short-term.

You can find more information about symptoms on our ‘Symptoms of bone cancer’ webpage.

There are different types of osteosarcoma. The type depends on where in the bone it starts, what the cancer cells look like and how they behave.

The 2 main types of osteosarcoma are ‘central osteosarcoma’ and ‘surface osteosarcoma’.

1. Central osteosarcomas start in the hollow, central part of the bone called the ‘medullary cavity’. Around 95 in every 100 people with osteosarcoma will have a central osteosarcoma.

There are different sub-types of central osteosarcoma:

• Conventional osteosarcoma: This is the most common. Around 75 in every 100 people with osteosarcoma will have a conventional osteosarcoma. It is a high grade central osteosarcoma.
• Telangiectatic osteosarcoma: A rare type of high grade central osteosarcoma.
• Small cell osteosarcoma: A rare type of high grade central osteosarcoma.
• Giant cell rich osteosarcoma (GCRO): A rare type of high grade central osteosarcoma.
• Low grade central osteosarcoma: A rare type of low grade central osteosarcoma.

2. Surface osteosarcomas start on or near the surface of a bone. There are 3 sub-types of surface osteosarcoma:

• Parosteal osteosarcoma: This is low grade.
• Periosteal osteosarcoma: This is low grade.
• High grade surface osteosarcoma.

They are all rare. Around 5 in every 100 people with osteosarcoma will have a surface osteosarcoma.

There are also different ‘grades’ and ‘stages’ of osteosarcoma:

• Grade is how the cancer cells look under a microscope. The grade can be used to predict how quickly the cancer might grow and spread. High grade cancer cells look very abnormal. They are likely to grow and spread more quickly than low grade cells.
• Stage is how big the tumour is and if it has spread to other parts of the body.

To find out the type, grade and stage of an osteosarcoma tumour, doctors will:

• take images of the tumour using scans
• take a small sample of the tumour and look at the tumour cells under a microscope. This is called a ‘biopsy’

See the ‘Diagnosing osteosarcoma’ section for more information.

You can find out more about how cancer is staged and graded on our ‘About primary bone cancer’ webpage.

Osteosarcoma starts when bone cells become abnormal and grow out of control. This forms a mass or growth made of cancer cells called a tumour. The cells in the tumour still act like bone. They try to make new bone as they grow and divide. It is still not fully understood why this happens and, in most cases, the cause of osteosarcoma is unknown.

However, we do know that:

• you cannot catch osteosarcoma from anyone else
• there do not seem to be any environmental factors, such as natural radiation, that cause osteosarcoma
• osteosarcoma is not caused by something you have done

Risk factors

There are risk factors that increase a persons’ chance of getting osteosarcoma. A risk factor is something that puts a person at a higher risk of getting a disease or illness.

Risk factors for osteosarcoma include:

1. Rare conditions passed on from parents (inherited), including:

• An inherited fault in a gene called ‘TP53’ or ‘p53’: this causes ‘Li-Fraumeni syndrome’. This greatly increases a persons’ risk of developing osteosarcoma. More information about Li-Fraumeni syndrome can be found at The George Pantziarka TP53 Trust website.
• An inherited fault in a gene called ‘RB1’: The person affected is at higher risk of developing a rare childhood eye cancer called ‘retinoblastoma’ and osteosarcoma.
• Rothmund-Thomson syndrome, Bloom syndrome and Werner syndrome. All rare conditions caused by faults in genes and increase the risk of a person developing osteosarcoma.

2. Previous radiotherapy treatment for cancer and other conditions: It can damage the DNA in bone cells. This increases the risk of them becoming cancerous and can lead to osteosarcoma developing. If this happens it is called ‘secondary osteosarcoma’.

Talk to your doctor if you are worried about any of these risk factors.

Getting a diagnosis

The symptoms of osteosarcoma are usually not specific and can be similar to other common, non-cancerous conditions. There is no one clear sign that doctors can easily look for to make a diagnosis. Most people go to their doctor if they are worried and some people go to their local hospital’s emergency department (A&E).

Some people are sent (‘referred’) quickly for more tests or a second opinion, but often people have to go back to their doctor quite a few times before this happens. Primary bone cancers are very rare and many GPs (general practitioners) will have no experience of them.

The Bone Cancer Research Trust (BCRT) is trying to find ways to reduce the time between a person noticing symptoms and getting a diagnosis.

Bone cancer centres

If initial tests show that cancer may be present, you will need to go to (be ‘referred’ to) a bone cancer centre. If the tumour is not in a long bone, such as the jaw or spine, you may be referred to a centre which specialises in cancers of those parts of the body.

Bone cancer centres are special centres where a group of people who are experts in bone cancer will discuss and manage your diagnosis and care together. This group of experts is called a multi-disciplinary team (MDT). It may include doctors, nurses, support workers, dieticians, physiotherapists and other experts.

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

These bone cancer centres are shown on the map below:

Find out more in our downloadable resource: Bone cancer centres and hospital treatment centres.

Diagnostic tests

Doctors will carry out different tests before a diagnosis of osteosarcoma can be confirmed.

These tests may include:

• X-ray. This is usually carried out first. It should be done from different angles (in 2 planes), to get a good image of the bone.
• blood tests
• CT scan
• MRI scan
• PET scan
• biopsy of the tumour

Imaging such as X-rays and scans 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 called ‘staging’.

Taking a biopsy involves taking a small sample of the tumour and examining it under a microscope. The biopsy will be done at a bone cancer centre. Results from a biopsy can take up to 2 weeks to analyse.

Visit the Macmillan Cancer Support website to find out more about the different types of diagnostic tests and scans.

Using all the test results, doctors can confirm a diagnosis of osteosarcoma and decide on a treatment plan.

You may be asked to donate a 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, access to a different treatment, or an opportunity to participate in clinical trials
• help other sarcoma patients and more widely, 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.

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

Lots of different things are taken into account when doctors make a prognosis for osteosarcoma. The main ones are:

• what the osteosarcoma cells look like under a microscope
• where in the body the tumour is. This can affect which treatments will work best
• the size of the tumour
• the age and general health of the person
• if the osteosarcoma has spread (is metastatic)
• how the tumour responds to treatment

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

Since the 1970s, the number of people who survive osteosarcoma has increased. This is because of chemotherapy treatment and better surgical methods.

Overall, around 57 people in every 100 people with osteosarcoma are alive 5 years after their diagnosis. However, prognosis depends on the grade and stage of the cancer.

• Prognosis is better for people diagnosed with low grade osteosarcoma compared to those diagnosed with high grade osteosarcoma.
• Prognosis is better for people diagnosed with osteosarcoma that has not spread to other parts of the body.
• Prognosis is better for younger people compared to people who are 40 years of age or older when diagnosed with osteosarcoma.

It may help to talk about any feelings of anxiety or concern once your diagnosis has been confirmed. Some hospitals offer a ‘Holistic Needs Assessment’. This is where you can chat with someone in your medical team who will ask questions about your worries and concerns. It covers all parts of life, not just how cancer and treatments affect the body.

Together, you will make a care and support plan to help you manage your worries and concerns. You may be offered an assessment around the time of diagnosis, during treatment or after treatment has ended.

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

Where you will be treated

Where you are treated will depend on where the cancer is, how old you are and a number of other things.

You will usually have surgery at a bone cancer centre. You may have to travel a long way to get there. Take a look at our map of UK bone cancer centres in our downloadable resource: Bone cancer centres and hospital treatment centres.

Chemotherapy, also called ‘chemo’ and radiotherapy may take place at a bone cancer centre or a different hospital closer to you. Your medical team will talk to you about this.

Who will be involved in treatment

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

Each patient is given a clinical nurse specialist (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

There are different treatments for osteosarcoma. Everyone will have a slightly different treatment plan depending on the grade and stage of the cancer and where it is in the body.

Doctors may call the treatments ‘local’ and ‘systemic’. Local treatment includes surgery and radiotherapy. Systemic treatment includes chemotherapy.

• For high grade osteosarcoma, the standard treatment in the UK is chemotherapy and surgery. Radiotherapy is only used in some cases if surgery is difficult, or not possible.
• For low grade osteosarcoma, you may only have surgery.

Your multi-disciplinary team (MDT) should 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.

Remember, if you are having treatment outside the UK, you may have different tests and treatments, depending on the treatment guidelines in that country. If you have any questions about this, talk to your medical team or contact our Support and Information Team.

Chemotherapy

Chemotherapy, sometimes called ‘chemo’, is a treatment for osteosarcoma that travels around the whole body through the bloodstream.

Chemotherapy treatment usually takes 30 to 32 weeks. 10 weeks before surgery, then a break for surgery, followed by 18 weeks after surgery.

Chemo is given in 'cycles.' A cycle is the treatment time plus resting time. The resting time helps the healthy cells to recover before the next cycle starts. How long each ‘cycle’ lasts will depend on the type or mix of chemo medicines and how you respond.

Chemotherapy may be given as part of a clinical trial. A study to test how well new or different combinations or doses of medicines or treatments work. Your multi-disciplinary team (MDT) will let you know about any clinical trials that are available to you. See section ‘Clinical trials for osteosarcoma’ for more information.

Chemo before surgery

After you have been told you have osteosarcoma, your chemo will probably start quickly. The doctors will talk to you and answer any questions you may have about your treatment plan first.

Chemo before surgery (called ‘neoadjuvant chemotherapy’) is used to:

• shrink the tumour
• destroy any cancer cells that could have spread to other parts of the body.

It is usually given in 2 cycles over 10 weeks.

In the UK, Ireland, much of Europe and the USA, the current standard chemo treatment for osteosarcoma before surgery is made up of 3 chemo medicines. They are:

• high dose methotrexate (M)
• doxorubicin, also called Adriamycin (A)
• cisplatin (P), which is platinum-based.

Together, these medicines are called 'MAP'. The medicines are given together so that if one does not work very well, the others may still destroy the cancer cells.

Chemo after surgery

Chemo may also be given after surgery (called ‘adjuvant chemotherapy’). It is used to:

• destroy any remaining cancer cells
• lower the chance of the cancer coming back.

In the UK, Ireland, much of Europe and the USA, the current standard chemo treatment for osteosarcoma after surgery is made up of the same 3 ‘MAP’ medicines. They are usually given in 4 cycles over 18 weeks.

Other chemo medicines

Other chemo medicines may be used to treat osteosarcoma if you do not respond well to ‘MAP’ chemotherapy, have serious side effects from it, or if the cancer comes back. These other chemo medicines may include: ifosfamide, etoposide, gemcitabine and docetaxel.

Your doctor will talk to you about which chemotherapy is suitable for you.

How chemotherapy works

Cancer cells divide and grow quickly, so chemo medicines were developed to target cells that divide quickly. Different chemo medicines target different cancer cells in different ways, that is why more than one medicine is usually given. This is called ‘combination chemo’.

How chemotherapy is given

Some chemo medicines may be given by mouth but for osteosarcoma, you will probably be given chemo directly into your blood by intravenous infusion (I.V.). The medicines go through a central line. This is a long, flexible, plastic tube that goes into a vein in the chest or arm. The tube is connected to a bag that holds the chemo medicine. The medicine ‘drips’ into the tube and then into the blood. An infusion is a way of giving a dose of I.V. medicines over a set period of hours or days.

Central lines can be kept in for weeks or even a few months. Using these lines means you do not need as many injections during treatment. It also means that more than one medicine or treatment can be given at the same time. For example, fluids and nutrition.

There are different types of central line. They are all slightly different. Your medical team will talk to you about which type is best for you. You can find out more about central lines at the Macmillan Cancer Support website.

Side effects of chemotherapy

Most healthy cells do not divide quickly. However, hair follicle cells, skin cells, bone marrow cells, and those lining the digestive tract (where food moves through the body) do. This means chemo can also affect these healthy cells and this is what causes side effects. Doctors can give you medicines before and after chemo to help with some side effects. The side effects should go away after the chemo has finished.

When doctors tell you the list of side effects that you could get, remember that you might not get any of them. You might only get some of them, and they might not affect you as much as other people. If you do not have the same side effects as other people having the same chemo, it is okay. This does not mean your treatment is not working.

The most common side effects of chemotherapy are:

• feeling and being sick
• low levels of white blood cells (neutropenia)
• lack of energy (fatigue)
• hair loss
• sore mouth
• taste changes
• weight changes

It might help to talk to your medical team and other people who have had cancer treatment about side effects and how to cope with them. The Bone Cancer Research Trust (BCRT) has a selection of support and information videos which you may find helpful to watch.

You may also like to read the book ‘Chemotherapy, cakes and cancer’ written by former osteosarcoma patient Megan Blunt. It is available to download from the Young Lives vs Cancer website.

Surgery

Most people have surgery to remove the main tumour. They may have it as a standalone treatment or with chemotherapy.

The most common time to have surgery is after the initial 10 weeks of chemotherapy. However, this will depend on your treatment plan. Sometimes surgery is done later, during chemotherapy or at the end of chemotherapy. Your medical team will talk to you about this.

The aim of surgery is to completely remove the tumour and keep the body working as normally as possible. The multi-disciplinary team (MDT) usually decide if surgery is possible. The team includes expert surgeons.

The type of surgery will depend on:

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

Your surgeon will explain what type of surgery is best for you.

If the tumour has spread to other parts of the body, such as the lungs, your medical team may think about removing these secondary tumours by surgery.

For some people, it is very difficult to remove the tumour by surgery. For example, if it is in the pelvis, spine, skull or jaw. In this case, radiotherapy may be used instead. You can read more about radiotherapy below.

Limb-sparing surgery

If the osteosarcoma is in an arm or leg (limb) the medical team will do their best to save the limb by doing ‘limb-sparing surgery’ or ‘limb salvage surgery’. This is where the whole tumour is removed. It is replaced with a piece of bone from another part of the body or from another person (a bone graft). In some people, part or all of the bone is replaced with a metal implant called an ‘endo-prosthesis’. The implant may be a complete joint if the tumour was near a knee, hip or shoulder.

If you need limb-sparing surgery, a physiotherapist will talk to you about what will happen before and after the operation. They will also talk to you about rehabilitation, also called ‘rehab’.

Rehab is the process of making your body stronger after surgery and learning to live with the changes to your body. The physiotherapist will give you some exercises to do before surgery and you will start rehab very soon afterwards. The physiotherapist will get you to do lots of exercises to help you strengthen the limb and get you moving again.

You may also talk to an ‘occupational therapist’. They can help you prepare for day-to-day life after surgery. They may talk to you about changes you can make at home to help you move around safely and independently.

After the operation, you will have regular check-ups with your surgeon. They will check how you are recovering and if the implant or bone graft is working well. They will also check for signs of infection.

Amputation

Sometimes it is not possible to remove a bone tumour from an arm or leg (limb). In this case, limb-sparing surgery will not work and an ‘amputation’ may be needed. This is when all or part of an arm or leg is removed.

An amputation may be needed if the tumour:

• cannot be removed entirely. For example, it may have grown into important nerves and, or blood vessels
• is in a place where the arm or leg would not work properly after limb-sparing surgery
• has not responded to chemotherapy

Your multi-disciplinary team (MDT) will decide if an amputation is the best treatment for you. Your surgeon will talk to you about this.

Find out more about amputation on our ‘amputation’ webpage.

Mepact (Mifamurtide)

Mepact, also called ‘Mifamurtide’, is a medicine sometimes used to treat osteosarcoma. It is given with chemotherapy after surgery. It helps white blood cells in your body attack and destroy any cancer cells that may be left.

In the UK, Mepact is only approved for use after surgery in people aged 2 to 30 years old, with high grade osteosarcoma that has not spread (is non-metastatic). This means studies and trials have shown it is safe to use in this group of people only. Your healthcare team should talk to you about whether Mepact may be an option for you.

Treatment with Mepact usually starts a few weeks after surgery. It is given twice a week for 12 weeks and then once a week for the next 24 weeks.

The Bone Cancer Research Trust (BCRT) provided input into the decision making process which led to the approval of Mepact for osteosarcoma patients in the UK.

Radiotherapy

Radiotherapy means treating the tumour with high doses of concentrated radiation. It is not often used to treat osteosarcoma. It is not as good as chemotherapy at destroying osteosarcoma cells.

However, it may sometimes be used:

• after surgery, if the whole tumour is not removed
• instead of surgery, if the tumour cannot be removed by surgery

Your medical team will decide on the dose and how long radiotherapy treatment will last.

This webpage from the NHS website shows a video of what happens during radiotherapy.

Proton Beam Therapy

Proton Beam Therapy (PBT) is a type of radiotherapy. It delivers high dose radiation to the tumour, to destroy the cancer cells. Healthy tissue around the tumour is less likely to be damaged by PBT, than standard radiotherapy. This means there may be fewer side effects.

Only a small number of people will be eligible for PBT It is very rarely used to treat osteosarcoma. Your doctor will talk to you if they feel PBT will benefit you. In the UK, PBT is only available at The Christie Hospital, Manchester and at University College London Hospital.

If you are having PBT, The Bone Cancer Research Trust (BCRT) offers financial assistance to support the extra costs associated with travel and hospital stays. You can find out more about this on our Financial Assistance Grants webpage.

Tests before, during and after treatment

You will have different tests and scans before, during and after treatment. These are to check if the treatment is working and to check for any side effects of the treatment. Chemotherapy may affect your hearing, heart and kidneys, so these tests are important.

Setbacks

Things may not always go as smoothly as you and the doctors would like during treatment. There may be times when you feel really unwell, get an infection or need to have more surgery. These setbacks are a normal part of cancer treatment. People will have different setbacks at different times, but it does not mean that the treatment is not working.

It might help to read stories from other people with experience of being treated for primary bone cancer. We have stories that you can read on our website here.

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 worried about leaving behind the medical team and support network at the hospital. Your family may also feel like this. These are all normal feelings.

You may like to join a support group or contact other primary bone cancer patients through blogs or on social media. Our Support and Information team at the Bone Cancer Research Trust provide support and information for people affected by primary bone cancer. They can also connect people with others who have experience of primary bone cancer.

Other services are available which offer support, they include:

• Psychological support and services: Psychologists will support people with any concerns, 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.

You may find the following specific resources from ‘The Children’s Cancer and Leukaemia Group (CCLG)’ helpful:

• I have finished cancer treatment. What happens next?: A booklet for older children and teenagers who have reached the end of their cancer treatment.
• Living beyond cancer: Information and support for those who had cancer as a child, teenager or young adult

Macmillan Cancer Support provide helpful information and support for young people and adults who have been through cancer treatment. You can find resources on their website.

Follow-up care

When you finish treatment, your doctors will want to monitor you for a long time. This is called ‘follow-up care’.

You will need to attend outpatient hospital visits on a regular basis. How often will depend on each person. It might be every 2 to 4 months for the first 3 years after finishing treatment, every 6 months for years 4 and 5 and then once a year after that.

At these visits, doctors will check your general health, talk about any concerns and run important tests to:

• check if the cancer has come back (called ‘relapse’ or ‘recurrence’)
• check for any ‘late effects’ from the cancer treatment. You can find out more about late effects on our ‘Long-term and late effects’ webpage.

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

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

In-between visits, it is important to get in touch with your key worker or doctor straight away if you have any problems or concerns.

Rehabilitation

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

Rehab services include: 

• Physiotherapists: Help people return to an active lifestyle, restoring strength, movement and function.
• Occupational therapists: Help improve peoples’ 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 might find it helpful to watch our Support and Information videos about rehab.

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. 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 osteosarcoma comes back

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

You may be given a different mix of chemo medicines or need more surgery. You may be invited to take part in a clinical trial and some people may benefit from radiotherapy. Everyone is different and treatments will depend on each person.

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

Advanced osteosarcoma

Your doctor may have told you that your cancer can no longer be cured, and that the focus 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. Sometimes, chemotherapy is a part of palliative care. 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 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 subject area. 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 osteosarcoma.

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 webpage to order printed resources.

Books

• WHO Classification of Tumours Editorial Board. Soft Tissue and Bone Tumours. 5th edition. Lyon: International Agency for Research on Cancer; 2020. ISBN-13: 978-92-832-4502-5. Osteosarcoma content: pages 400-419. Genetic predisposition syndromes: pages 500-525
• Tattersall L, Davison Z, Gartland A. Osteosarcoma. In: Zaidi M, editor. Encyclopedia of Bone Biology. Amsterdam: Elsevier; 2020. p. 362-378. ISBN: 9780128140819

Guidelines

• Gerrand C, Athanasou N, Brennan B, Grimer R, Judson I, Morland B, Peake D, Seddon B, Whelan J, British Sarcoma Group. UK guidelines for the management of bone sarcomas. Clinical Sarcoma Research. 2016;6(7):1-21. https://doi.org/10.1186/s13569-016-0047-1 and references cited therein.
• S.J. Strauss, A.M. Frezza, N. Abecassis, P.G. Casali, S. Stacchiotti et al. Bone sarcomas: ESMO–EURACAN–GENTURIS–ERN PaedCan Clinical Practice Guideline for diagnosis, treatment and follow-up. Annals of Oncology. 2021;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. https://www.nice.org.uk/guidance/ng12 Accessed 01 July 2025.
• National Institute for Health and Clinical Excellence (NICE). Bone and soft tissue sarcoma - recognition and referral. Last revised in August 2020. https://cks.nice.org.uk/topics/bone-soft-tissue-sarcoma-recognition-referral/. Accessed 01 July 2025.

Key papers

Please see full reference list for clinical trials and other relevant publications

• Beird HC, Bielack SS, Flanagan AM, Gill J, Heymann D, Janeway KA, Livingston JA, Roberts RD, Strauss SJ, Gorlick R. Osteosarcoma. Nature Reviews Disease Primers. 2022 Dec 8;8(1):77. https://doi.org/10.1038/s41572-022-00409-y
• Freeman AK, Sumathi VP, Jeys L. Primary malignant tumours of the bone. Surgery (Oxford). 2018 Jan 1;36(1):27-34. https://doi.org/10.1016/j.mpsur.2017.10.001
• Hastings RA, Bacon A, Vinader V, Gains J, McPhail S, Paley L, Gerrand C, McCabe M, Strauss S. Incidence and Survival of Primary Bone Sarcoma Diagnosed in England between 1996 and 2020; an Analysis from the National Cancer Registration and Analysis Service. (Manuscript under review)
• Kundu ZS. Classification, imaging, biopsy and staging of osteosarcoma. Indian journal of orthopaedics. 2014 Jun;48(3):238-46. https://doi.org/10.1097/pap.0000000000000190

Reports

• Vinader V. Primary bone cancer statistics. June 2023 (Unpublished) and references cited therein. Available upon request.

Key websites

• Lindner L, Dimosthenis A, Bauer S, Bielack S, Grube M, Hartmann W, Hecker-Nolting S, Kollàr A, Kraywinkel K, Szkandera J, Timmermann B, Tunn P, Wörtler K. Osteosarcomas [internet]; 2023 Jan [cited 2024 May 7]. Available from: https://www.onkopedia.com/en/onkopedia/guidelines/...
• Cancer Research UK. Cancer drugs list A-Z: MAP [internet]; 2022 April 27 [cited 2024 May 7]. Available from: https://www.cancerresearchuk.org/about-cancer/trea...
• Macmillan. Cancer Information & Support: Osteosarcoma [internet]; 2022 Dec 01 [cited 2024 May 7]. Available from: https://www.macmillan.org.uk/cancer-information-an...
• Macmillan. Cancer Information & Support: After treatment – Finishing treatment [internet]; 2020 July 01 [cited 2024 May 13]. Available from: https://www.macmillan.org.uk/cancer-information-an...

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