Sometimes, if the primary bone cancer or soft tissue sarcoma has spread, the affected limb is amputated. You will have counselling and support before and after surgery.
It is usually possible to remove a cancer in an arm or leg without having to remove the whole limb. This is called limb-sparing surgery or limb-salvage surgery.
Before surgery, your cancer doctor will explain the operation to you. They will make sure you fully understand what is involved. You can ask questions about how the surgery might affect you.
Before the operation, you will meet the rehabilitation team who will help you after the operation. The team will include specialist doctors and nurses, as well as:
- a physiotherapist
- an occupational therapist (OT)
- a prosthetist – who fits an artificial limb (prosthesis) if needed.
They can answer any questions or help with any worries you might have about how you will cope after the operation. They will also talk to you about any changes you need to make to your home. These will make it easier for you when you go home after surgery.
Getting psychological support is important if you are going to have an amputation. Some hospitals have a counsellor you can talk to about your feelings and worries before the operation.
It may also help to talk to someone who has had the same operation. They may be able to give you practical advice and support. Your healthcare team or your keyworker may be able to arrange this for you.
You will usually have a drip (intravenous infusion) to to replace your body’s fluids. This can be removed as soon as you are drinking enough.
To start with, the area where you had your operation will be bandaged. You will have a tube in the wound to drain off any fluid that builds up. This is removed when fluid has stopped draining. This should take a few days.
Sometimes, fluid can build up around the wound. The swelling should reduce over a few weeks. Sometimes, a lot of fluid builds up around the wound. This is called a seroma. It may need to be drained by a doctor or nurse.
When the bandages have been removed, your physiotherapist or nurse will fit a compression garment. This helps reduce swelling, which can be a problem for some people. You will also be given advice about looking after the scar.
Pain can usually be controlled effectively with painkillers. They may be given:
- into a vein (intravenously)
- into the space around the spinal cord (epidural)
- into a muscle (intramuscularly)
- as tablets.
Let your nurses and doctors know as soon as possible if you are in pain. This will help them give you the right amount of painkillers.
Some people have a pain that feels like it is coming from the part of the limb that has been amputated. This is called phantom pain or phantom sensation. Although this pain should fade over time, there may be some discomfort in the area for a while after the operation. Let your nurses and cancer doctor know if you have any phantom pain. They can give you drugs to help control it, such as pregabalin or gabapentin.
Your nurses or the physiotherapist will teach you breathing and leg exercises. You can help yourself get better by doing the exercises as often as you need to.
The exercises will help prevent you getting a chest infection and blood clots. Chest infections or blood clots can develop if you are not moving around as much as normal.
To help prevent a blood clot in your leg (a deep vein thrombosis or DVT), you may be given elastic stockings (TED stockings) to wear. You may also be given injections of anti-clotting medicines to help thin your blood.
A physiotherapist or occupational therapist (OT) will help you get up. This often happens on the first or second day after the operation. It might be hard at first, and you will need to start slowly.
If you have had an arm amputated, you will be able to get up and move around once your pain is controlled and you have recovered from the anaesthetic.
If you have had a leg removed, the physiotherapist will show you how to move around in bed and how to transfer into a chair. To start with, you will use a wheelchair to get around. Within a few days, you may also be able to start using elbow crutches or a walking frame. The physiotherapist will help you.
The OT will arrange for you to have a wheelchair to use in the hospital. You may need the wheelchair at home while you get used to moving around using crutches or an artificial limb. So before you go home, you will be referred to your local wheelchair service. You will also be given advice about using a wheelchair at home.
When you are moving around more, you will go to the hospital gym for physiotherapy. This is a very important part of your recovery.
Your physiotherapist will give you exercises to do as the wound heals and you gain strength. They will show you how to keep the muscles around the amputated limb strong and supple. This will make it easier to work an artificial limb.
Your physiotherapist will arrange for you to keep having physiotherapy when you go home. This will usually be as an outpatient and can often be somewhere near where you live.
Amputation is a major operation, and rehabilitation can take a long time. It can be hard work and may be frustrating at times.
After the amputation, the OT will help you manage your day-to-day activities, such as getting washed, dressed and using the toilet. They can show you ways to manage your activities and recommend equipment to help you be as independent as possible.
If you have had an arm amputated, your occupational therapist may teach you ways to help reduce swelling. They will also teach you ways of doing some activities with one hand.
The OT can also give you advice about driving, work and getting back to social activities. They will help you think about how your amputation may affect your life and look at different ways to manage it.
Before leaving the hospital, your nurse, physiotherapist and OT will talk to you about how you will manage at home.
Together, you need to assess and plan how you will manage your normal daily living activities and whether you need any equipment. They may also refer you to your local social services for further assessment.
You may need to make changes to your home and the way you do certain activities. The OT and physiotherapist will help you with this. This can sometimes delay you going home from hospital, which may be frustrating.
If you have had a limb removed, you must tell your car insurance company and the:
- DVLA in England, Scotland or Wales
- DVA in Northern Ireland.
There are changes that can be made to your car to help you drive. Your OT can tell you more about them. They can also suggest organisations that can help with the changes you need.
A healthcare professional, welfare rights adviser or social worker can help with the application.
Amputation can be very distressing and can take a long time to come to terms with.
Feelings and emotions
Losing an arm or a leg can feel like a bereavement. You will need time to grieve for your loss and start coping with the emotional and practical problems this type of surgery can bring. We have more information about dealing with the emotional effects of cancer.
Even if you thought you had a good idea of what to expect before surgery, you may still feel shocked and distressed after the operation. This may be because the full realisation of having lost an arm or leg hits you. You are used to what your body looks like, and it can be very hard to come to terms with a major change such as an amputation. Feeling like you look different from other people can affect your self-confidence. At times, you may even wish you had never had the operation. At first, you may find it hard to see people after your amputation. But you and the people close to you will get used to the way you look. This will also help you become more confident about dealing with the reactions of people you do not know. You may want to take someone with you when you first go out, to give you emotional support. You may find other people do not even notice your amputation, especially if you are wearing an artificial limb. We have more information to help you cope with body changes.
Family and friends
Your family and friends may also find it hard to come to terms with their feelings about your amputation. You may be anxious about what they will say or think, and if you will be able to cope with how they react. But most people find their family and friends want to do as much as possible to support them. It can help to talk about your feelings and any worries you have. We have more information to help you talk about cancer.
Your sex life
You may feel unattractive and embarrassed about your body. If you have a partner, you may be worried they will not find you attractive any more. Meeting a new partner may seem scary. We have more information about cancer and your sex life.
You will need time and help to come to terms with your emotions, which are likely to be very strong. The hospital staff will know this and will help you as much as they can. Often, there are counsellors or psychologists in the hospital. The staff can arrange for you to see them.
Many people find it helpful to talk about their feelings with a close friend or someone who is removed from their situation, such as a counsellor.