Bone cancer: Teenagers and young adults

This section about bone cancer is for teenagers and young adults. There are different types of bone cancer, and most of this information applies to all types. If you have a rare type of bone cancer and want to know more, you could talk to Macmillan.

If you're looking for information about bone cancer in people of all ages, read our general bone cancer section.

Types of bone cancer

There are different types of bone cancer. The 2 most common bone cancers to affect teenagers are osteosarcoma and Ewing sarcoma.

Osteosarcoma

Osteosarcomas are most likely to affect bones in the leg, especially around the knee joint, but they can affect any bone.

Ewing sarcoma

Ewing sarcoma can affect any bone, but it’s most common in the pelvis (which is made up of the tail bone and the 2 hip bones), or in leg bones. Ewing sarcoma can sometimes start outside the bone in the soft tissue. This is called soft tissue Ewing sarcoma, and is treated in the same way. Sarcoma is the name for a cancer that starts in any connective tissue, such as muscle, fat or cartilage.

In this information we sometimes use the term ‘bone tumour’. This means the same as bone cancer.

Causes

The cause of bone cancer is unknown. Because it’s more common in young people, doctors think that it may be linked to the changes that happen when bones are growing. There is lots of ongoing research into the possible causes.

People often think a knock or injury might have caused bone cancer, but there’s no evidence for this.

Remember that nothing you’ve done has caused the cancer.

Signs and symptoms of bone cancer

Bone cancer symptoms vary, and not everyone will feel the same. Many symptoms are similar to everyday aches and pains, so they can be mistaken for other things, like strains, sports injuries or growing pains.

The main symptoms are:

• pain or tenderness – this may start as an ache that doesn’t go away and may be made worse by exercise or feel worse at night
• swelling around the affected area of bone – swelling may not show up until the tumour is quite large and it isn’t always possible to see or feel a lump if the affected bone is deep inside the body
• reduced movement – if the bone tumour is near a joint (like an elbow or knee), it can make it harder to move the joint; if it’s in a leg bone, it may cause a limp; if it’s in the backbone (spine), it may press on nerves and cause tingling and numbness in the legs or arms
• a broken bone – a bone may break suddenly, or after only a minor fall or accident if the bone has been weakened by cancer.

There might also be other symptoms including:

• tiredness 
• a high temperature 
• loss of appetite 
• weight loss

If you have any of these symptoms, or you are worried that you may have a bone tumour, you should get it checked by your GP. They can talk to you about your symptoms, and arrange tests if they feel they’re needed.

Remember – most people with these symptoms won’t have bone cancer.

Knowing what your bones do might help you understand what bone cancer is.

Bones are like human scaffolding. They help keep you upright. The human skeleton is made up of more than 200 bones of different shapes and sizes.

Bones do lots of important things: 

• they work with joints and connective tissue so that you can move around
• they protect parts of the body from injury – for example, the ribs protect the heart and lungs
• they store calcium
• some bones contain bone marrow, which make blood cells

Joints

Joints help bones fit together so that we can move freely. There are different types of joint. Some work as levers, like the finger joint. Others are ball-and-socket joints, such as the hip joint. There are different types of connective tissue that help bones move:  

• ligaments are tough cords of tissue that attach bones to each other
• cartilage is a slippery material that covers the ends of bones to stop them rubbing together
• muscles are made of tough, stretchy tissue and give strength
• tendons are strong cords of tissue that attach muscles to bones

We also have more information about:

• symptoms of bone cancer 
• having tests for bone cancer 
• treatment for bone cancer 
• life after bone cancer 
  
  

If you're looking for information about bone cancer in people of all ages, read our general bone cancer section. 

There are some tests you might have when you visit your GP or at the hospital. The tests will help the doctors see whether you have bone cancer.

Visiting your GP

If you think you might have some of the symptoms of bone cancer, you should speak to your GP.

Your GP will talk to you about your symptoms, examine you and usually arrange some tests, such as X-rays and blood tests. There may be a number of reasons why you're feeling unwell, so it can be difficult to diagnose the problem straight away. If your GP can't find the cause, you may be referred to a specialist at the hospital.

At the hospital

The hospital you're referred to will depend on the results of the tests. You may go straight to a doctor specialising in bone cancer, or you might see doctors with more general experience first.

The hospital doctor will examine you and arrange for some of the following tests: 

• X-rays 
• bone scans 
• biopsies 
• MRI and/or CT scans

If you're diagnosed with bone cancer and not already seeing a specialist bone doctor, you’ll be referred to one. 

Further tests

If the tests show you have bone cancer, you might need a few more tests to check how your body is working in general: 

• blood tests 
• tests to check your heart is healthy 
• chest X-rays to check your lungs are healthy 
• tests to check your kidneys are healthy – you may need to give a sample of pee (urine) to be tested

This may seem like a lot of tests, but they’ll help the doctors plan the best treatment for you.

Having tests and waiting for the results can be an anxious time. Talking about how you feel and getting support from family, friends, your specialist nurse or your doctor can help.

We have more information about:

• the bones
• symptoms of bone cancer 
• treatment for bone cancer 
• life after bone cancer 

If you're looking for information about bone cancer in people of all ages, read our general bone cancer section.

The information on this page is about Ewing sarcoma and osteosarcoma. If you have a different type of bone cancer and want to know more, you can talk to Macmillan.

The 3 main treatments for bone cancer are chemotherapy, surgery and radiotherapy. Most people have a combination of these.

Your doctors will plan your treatment based on: 

• the type of bone cancer you have 
• where the cancer is 
• the stage of the cancer (this means whether it has spread outside the bone) 
• how fast-growing the cancer is

If you have any questions about your treatment, ask your doctor or nurse. They'll be happy to help you understand what's involved.

You may be offered the opportunity to take part in a clinical research trial. These trials help doctors find new and better treatments for people with bone cancer. If your doctor thinks you are suitable for a clinical trial, they'll discuss this with you.

In this information we sometimes use the term ‘bone tumour’. This means the same as bone cancer.

Chemotherapy

Chemotherapy is when you’re given anti-cancer drugs to destroy the cancer cells. It’s an important treatment for bone tumours. It helps shrink the tumour before surgery or radiotherapy, and it can kill cells that have spread outside the bone. After your surgery or radiotherapy, you’ll usually have more chemotherapy.

Chemotherapy for bone cancer is given into a vein, usually through a central line, a port or a PICC line.

You’ll have chemotherapy over a few days and then you’ll have some time off to give your body a chance to recover from any side effects. The days you have the chemotherapy and the rest period afterwards is called a cycle. Most people have several cycles of chemotherapy. You'll probably need to stay in hospital for some of the time during chemotherapy. 

The type of chemotherapy you have depends on whether the tumour is an Ewing sarcoma or an osteosarcoma.

Chemotherapy for Ewing sarcoma

For Ewing sarcoma, the drugs most often used first are vincristine, ifosfamide, doxorubicin and etoposide. Giving these drugs together is called VIDE. You’ll usually have 6 cycles of VIDE.

After your chemotherapy you may have surgery, or, if the tumour can’t be removed with an operation, you’ll have radiotherapy. Some people have both surgery and radiotherapy. The team looking after you will decide on the best combination for you.

If you have surgery, you’ll have more chemotherapy afterwards to help stop the tumour coming back or spreading to other parts of the body.

At the moment, there is a clinical trial called Euro-Ewing 2012 that is comparing different combinations of chemotherapy treatments before and after surgery for people with Ewing sarcomas. You can talk to your specialist doctor about whether you could take part in this trial.

Chemotherapy for osteosarcoma

Osteosarcoma is usually treated with 3 chemotherapy drugs called methotrexate, doxorubicin (Adriamycin) and cisplatin. Giving these drugs together is called MAP.

You will usually have 6 cycles of chemotherapy in total. Each cycle takes about 5 weeks. After the first 2 cycles, you’ll have surgery to remove the cancer.

If the cancer has spread, you may also need to have surgery on another part of your body. For example, if osteosarcoma spreads outside of the main tumour, it usually spreads to the lungs. If the cancer has spread to your lungs, you may need a second operation to remove the cancer in your lungs. If you have bone cancer that's spread, your doctors will talk to you about what will happen next.

After surgery, you’ll have 4 more cycles of MAP chemotherapy. You may also be given a new treatment called mifamurtide (Mepact), which helps your body kill tumour cells. Your doctor will tell you if you can have this drug as well as your chemotherapy.

Side effects

Different chemotherapy drugs cause different side effects. Some people have just a few side effects and others have more. It's hard to know how it's going to be for you. Most side effects are temporary and gradually disappear once treatment stops.

The most common are a sore mouth, hair loss, tiredness, sickness and being more at risk of getting an infection.

The most common side effect of mifamurtide is having a high temperature or feeling cold and shivery for a few hours after it’s given.

Surgery

The surgery you have will depend on the type of bone cancer you have and where it is in the body.

Your surgeon will aim to remove all of the cancer, while trying to keep as much function in the limb as possible.

Limb-sparing surgery

Most people with bone cancer have an operation called limb-sparing surgery. This means the surgeon removes the cancer without having to remove the arm or leg it’s in. You’ll have all the tumour taken away from your limb, including any bone and muscle affected by the tumour.

It’s usually possible to remove the affected part of the bone and replace it with a custom-made metal fitting (endoprosthesis) or with a bone from another part of the body (bone graft). If the cancer affects a bone in or near a joint, the whole joint can often be replaced with an artificial one. In some cases, the surgeon can remove the affected bone without replacing it with anything and without it affecting the way you move.

Before the operation

If you've had chemotherapy, you'll need 2 or 3 weeks to recover before you can have your operation. Doctors will make sure that you're well enough to have the operation. If you’ve lost weight or been off your food, you might need to build yourself up a bit before the operation. The hospital dietitian can help you do this. You’ll probably see a physiotherapist, who’ll give you exercises to strengthen your muscles.

You may like to see the replacement part or endoprosthesis (often just called a prosthesis) that will be put in during your operation. If you would like to see it, your surgeon or key worker can usually arrange this.

After the operation

You’ll have a bandage or splint on your limb to keep it supported and let it heal.

You’ll probably have a tube, called a drain, coming out of your wound. This stops fluid building up in your wound. A nurse will take it out after about 3 to 4 days.

You won’t feel like eating or drinking much for a few hours after your operation, so you’ll be given fluids into a vein. This is called a drip.

You’ll probably feel a bit sore to begin with, but you’ll be given strong painkillers to help. It’s important to tell the nurses if you need extra pain relief. The pain usually starts to get better within 2 or 3 days. As time goes on, you'll need fewer painkillers and will start to feel a lot more comfortable.

Once you’re home, you should start to feel a bit better and stronger every day. But if you do have any problems, it’s important to tell your doctor or nurse right away, so they can deal with them quickly.

After your operation, you will need to do lots of physiotherapy to help you make the best possible recovery. This can feel like hard work but is really important. Your physiotherapist will tell you what exercises to do, and help you to do them regularly.

If you notice any new redness, pain or swelling in the limb that’s been operated on, it’s very important to get in touch with your doctor right away. You might have an infection that needs treatment, so you’ll need to see the surgeon who did your operation without delay.

There's more information about the long-term effects of limb-sparing surgery in our section on living with and after bone cancer.

Amputation

Sometimes the only way to get rid of the bone cancer affecting an arm or a leg is to remove the limb. This is called an amputation. It’s only done if there is no alternative. This is usually needed if the cancer has spread from the bone and has grown around nearby blood vessels. These need to be removed along with the cancer.

Some people choose to have an amputation rather than limb-sparing surgery. You should be given a chance to discuss the advantages and disadvantages of both types of surgery with your team.

An amputation may also need to be done if there’s an infection in the bone that doesn’t go away with treatment, or if the cancer comes back in the bone. Every person and every tumour is different, so you might meet other people with the same type of tumour, who are having slightly different surgery. Your specialist will talk to you about your operation and make sure you understand what's involved.

Before the operation

Your doctor will talk things through with you so that you fully understand what’s involved. Losing a limb can feel very scary and it might help to talk to your specialist nurse, key worker or a counsellor about your feelings. It might also help to talk to someone who’s had an amputation – your nurse or doctor can arrange this. It's really important to get support at this tough time.

After the operation

You’ll have bandages or a plaster cast on the area that’s been operated on. There’ll be a tube, called a drain, coming from the wound. This stops fluid building up. A nurse will usually take it out after 3 or 4 days. You’ll also have a drip to give you fluid into a vein in your arm until you feel like eating and drinking again.

You’ll probably feel a bit sore after your op, especially for the first 2 or 4 days, but you'll be given strong painkillers to help with this. It’s important to tell the nurses if you need extra pain relief. As time goes on, you’ll need fewer painkillers and will start to feel a lot more comfortable. You may have pain that feels like it’s coming from the part of the limb that’s been removed. This is known as ‘phantom pain’. Let your doctor or nurse know if you have this. There are medicines that can help ease it or take it away. It usually gets better and goes away in time.

A physiotherapist will visit you a day or so after your operation. They’ll show you exercises to keep your muscles strong and flexible.

If you’ve had an arm removed, you’ll be able to get up and move around once you’ve recovered from the anaesthetic and don’t feel too sore. If you’ve had a leg removed, the physiotherapist will show you how to move around in bed and get from your bed to a chair. You'll probably be moving around with crutches or in a wheelchair within a few days.

Once you’re up and about, you’ll go to the hospital gym for physiotherapy. This is a big part of your recovery. Your physiotherapist will give you more exercises to do as your wound heals and you get stronger.

It’ll take a few months for your limb to heal to its final shape after the operation, so you won’t be fitted with your permanent prosthesis until this happens. In the meantime, you’ll be given a temporary prosthesis and learn how to use it in physiotherapy.

You should be able to go home about 2 weeks after your operation.

There's more information about the long-term effects of amputation in our section on living with and after bone cancer.

Radiotherapy 

Radiotherapy treats cancer by using high-energy X-rays to destroy cancer cells.

Radiotherapy is mainly used to treat Ewing sarcoma. You may have radiotherapy after your chemotherapy, or before or after having surgery.

If you have osteosarcoma, you’re less likely to have radiotherapy treatment. But you might have it if an operation to remove the cancer isn’t possible. Occasionally, people with osteosarcoma have radiotherapy after surgery to remove their cancer.

Radiotherapy is generally given every weekday (Monday to Friday) for 5 weeks. Each treatment takes a few minutes.

Side effects

Radiotherapy isn't painful, but it can cause other side effects. After a few treatments you may begin to feel tired, and your skin may go red or get darker and feel sore or itchy around the area that’s being treated. This gets better once your radiotherapy treatment is over.

Other side effects depend on which part of your body is being treated. Having radiotherapy around a joint can make it feel stiff, but physiotherapy can help.

We also have more information about:

• symptoms of bone cancer
• having tests for bone cancer 
• life after bone cancer 
• the bones

If you're looking for information about bone cancer in people of all ages, read our general bone cancer section. 

This information is about life after having surgery for bone cancer.

Life after limb-sparing surgery

The long-term effects of limb-sparing surgery depend on which part of your body is affected and what kind of operation you have. The best person to ask about this is your surgeon.

After limb-sparing surgery, the limb might not work as well as it used to. Physiotherapy is an important part of your recovery. You’ll be given exercises to do to help you get your limb working as well as possible. These can be hard work, but it’s important to keep going with them.

Knee joint replacement

If you’ve had a knee joint replacement, you’ll be able to walk and swim, but your doctor might advise you not to play high-impact sports like hockey, football, tennis or rugby. These activities could damage or loosen the new joint.

It’s usually OK to run a short distance, for example for a bus. But running or jogging regularly wears out the new joint, so it’s best to avoid this. If your knee joint wears out or loosens, you might need to have it replaced after a few years.

Hip joint replacements

After a hip joint replacement, you should be able to do most of your usual activities, but you’ll probably be advised to avoid running and high-impact sports.

Shoulder replacement

If you’ve had a shoulder replacement, you’ll be able to move your arm below shoulder height the same as before, but you might not be able to lift your arm above your shoulder.

Bone graft

If you’ve had an implant put into your limb while you’re still growing, you’ll need to have it lengthened as your leg or arm grows. Some types of implant can be lengthened without an operation, but with others you’ll need surgery. Your specialist or key worker can tell you what kind of implant you have.

Life after amputation

After amputation, you usually have an artificial limb fitted. This is called a prosthesis. There are artificial limbs designed to let you do all types of physical activities, including walking, swimming, running, cycling and playing sports.

Different types of prosthesis let you do different things. Some people have one for wearing day-to-day, and an extra one specially designed for something like swimming or doing athletics.

How will I feel?

Things may be tough as you get used to living with the changes in your body, but help is available. You might have lots of different emotions. You might be tearful, angry, fed up or sad at times. You might feel like you've lost all your confidence and that you'll never be able to live a normal life or be in a relationship. These feelings are normal, and it's important to get support to help you cope with them. You could talk to: 

• your specialist nurse or key worker 
• family or friends 
• a counsellor, which can be arranged by your nurses 
• other young people in a similar situation, for example through Macmillan's online community or a support group

Other people's reactions can be hard to cope with too. You might be worried about what your friends think or how they're going to treat you. The thought of going back to school, college or work can be scary. Even people in your family who you are close to might not know what to say or do. Others might say things that sound stupid or seem hurtful.

Try to choose a couple of really close relatives or friends who you can talk to if things get you down. You might find it useful to talk to someone outside your close circle, like your specialist nurse, key worker or counsellor. Most people find it helps to talk about how they're feeling or what’s on their mind.

Follow-up

When you finish your treatment, your doctor will talk to you about what happens next. They will explain some of the long-term risks that bone cancer and its treatment could have for you. They will make arrangements to see you in a clinic to see how you are getting on.

We have more info about:

• the bones
• symptoms of bone cancer 
• having tests for bone cancer 
• treatment for bone cancer

If you're looking for information about bone cancer in people of all ages, read our general bone cancer section.