Follow-up after treatment for soft tissue sarcomas

While most people recover well after surgery for soft tissue sarcomas, and are able to move around quite soon, some people take longer and need extra help. Before you go home, the medical staff will talk to you about your situation. If you live alone or have several stairs to climb, you may need some help at home.

If you have any worries about going home, make sure you discuss them with the medical staff in advance so that help can be organised. Children and teenagers often worry about falling behind at school. Home tutoring can often be arranged with the local education authority. The social worker on your ward will be able to organise this for you.

After your treatment has ended your doctor will want you to have regular check-ups and x-rays, in particular chest x-rays. These will often continue for several years. If you have any problems or notice any new symptoms in between these times (for example, a lump or swelling at the area of your operation), let your doctor know as soon as possible.

The gaps between your appointments will get longer as the years go on. This is because the risk of the cancer coming back gets steadily lower over time.

What if the cancer comes back?

Sometimes, the sarcoma may come back or spread to other parts of the body including, most often, the lungs.

If tests show that you have a small amount of cancer in your lungs, it may be possible for you to have an operation to remove the part of the lung that is affected. If this operation is necessary in your case, your doctor will discuss it fully with you.

If the cancer comes back elsewhere, your doctor will talk to you about the different treatment options available in your situation. The most common treatment for people in this situation is chemotherapy.

Living with an amputation

Developments in surgery mean that many people with soft tissue sarcomas are now able to have limb-sparing surgery instead of an amputation. Unfortunately, some people will still need to have a limb amputated to treat their cancer. Amputation is, of course, 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 to start to cope with the emotional and practical difficulties this type of surgery can bring. Our section on the emotional effects of cancer discusses the emotions and feelings that a diagnosis of cancer can cause, and also the people and organisations available to help you to cope with them.

Body image

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, when the full realisation of having lost an arm or leg hits you. You will be used to what your body looks like and it can be very difficult to come to terms with a major change such as an amputation.

The sense of looking different from other people can seriously affect your self- confidence and make you afraid of being rejected – both socially and sexually. At times, you may even wish you had never agreed to the operation.

It may not be easy to let other people see you after your amputation. As you and the people close to you become more used to the way you look, you will become more confident about dealing with the reactions of people you don’t know so well.

Some people find it helpful to get out and about as soon as possible after the operation. However, it is important to take the time you need to get used to your amputation and to do things in your own time. You may want to take someone with you at first to give you emotional support. You may find that other people do not even notice your amputation, especially if you are wearing an artificial limb.

Help is available

You will need time and help to come to terms with your emotions, which are likely to be very strong. The staff on the ward will know this and will help you all they can. Often, there are counsellors or psychologists within the hospital, and the ward staff can arrange for you to see them.

Many people find it helpful to discuss their feelings in depth with a close friend or someone who is removed from their situation, like a counsellor. Support groups can give practical help and emotional advice, and can help stop you feeling as if you have to cope alone.

You may find it helpful to talk to someone who has had an amputation, either before or after your operation. The doctor or nurses on your ward may be able to arrange this for you.

Family and friends

Your partner, 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 whether you will be able to cope with their reactions.

This worry can feel very real, but most people usually find that their families and friends do not reject them, and want to do as much as possible to support them. It can help to be open about any fear of rejection.

Our section on talking about your cancer can help you find ways of talking to family and friends.

Sexuality

You may find that you feel unattractive and embarrassed about your body, and worry that no one will find you sexually attractive again. If you have a partner, you may be concerned that they will not find you attractive any more. Meeting new partners may seem particularly daunting. Our section on sexuality and cancer discusses these issues.