As sarcomas are rare cancers, you should always be referred for treatment at a specialist sarcoma unit where a team of specialist doctors and others work together. This is known as a multidisciplinary team (MDT) and may include:

• a surgeon
• a clinical oncologist – a doctor who treats cancer with radiotherapy
• a medical oncologist – a doctor who treats cancer with chemotherapy
• a pathologist – a doctor who specialises in how disease affects the body
• a radiologist – a doctor who analyses x-rays and scans
• a specialist nurse who gives information and support to people with sarcoma.

The multidisciplinary team may also include other healthcare professionals, such as:

• a dietitian
• physiotherapist
• occupational therapist
• psychologist or counsellor.

In order to plan the best treatment for you, your doctors will take into account your age, general health, and the type, stage and grade of the sarcoma.

Surgery is the most common treatment. If the soft tissue sarcoma is small and it is possible to remove it completely, surgery may be used on its own.

For larger sarcomas, and where there may be a possibility of cancer cells being left behind, radiotherapy is usually used as well as surgery. Radiotherapy may be given before the operation to shrink the tumour and make it easier to remove, or afterwards to try to destroy any cancer cells that may not have been removed.

Sometimes radiotherapy is used on its own or in combination with chemotherapy to treat more advanced sarcomas that can’t be removed.

Chemotherapy may sometimes be given before surgery, to shrink the tumour. It is sometimes given after surgery, to try to destroy any cancer cells that have not been removed or which may have spread to other parts of the body.

For gastrointestinal stromal tumours a drug called imatinib (Glivec®) may be used before or after surgery.

It often helps to make a list of the questions you want to ask your doctor, and to take a close friend or relative with you.

Usually a number of cancer specialists work together as a team and they use national treatment guidelines to decide on the most suitable treatment for a patient. Even so, you may want to have another medical opinion. Either your specialist, or your GP, will be able to refer you to another specialist for a second opinion if you feel it will be helpful. The second opinion may cause a delay to the start of your treatment, so you and your doctor need to be confident that it will give you useful information.

If you do go for a second opinion, it may be a good idea to take a friend or relative with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.

Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form, you should have been given full information about:

• the type and extent of the treatment you are advised to have
• the advantages and disadvantages of the treatment
• any other types of treatments that may be appropriate
• any significant risks or side effects of the treatment.

If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments can be very complex, so it is not unusual for people to need repeated explanations.

It is often a good idea to have a friend or relative with you when the treatment is explained, to help you remember the discussion more fully. You may also find it useful to write down a list of questions before you go to your appointment.

Patients often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.

You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.

Many people are frightened at the idea of having cancer treatments, because of the potential side effects that can occur. Although many of the treatments can cause side effects, these can often be well controlled with medicines. Some people ask what would happen if they did not have any treatment. Treatment can be given for different reasons and the potential benefits will vary depending upon the individual situation.

Early-stage sarcoma

In people with early-stage sarcoma, surgery is often done with the aim of curing the cancer, and additional treatments may also be given to reduce the risks of it coming back.

Advanced-stage sarcoma (metastatic)

If the cancer is at a more advanced stage, the treatment may only be able to control it – leading to an improvement in symptoms and a better quality of life. However, for some people the treatment will have no effect upon the cancer and they will get the side effects with little benefit.

If you have been offered treatment that is intended to cure your cancer, the decision whether to accept it may not be a difficult one. However, if a cure is not possible and the treatment is being given to control the cancer for a period of time, it may be more difficult to decide whether to go ahead with treatment or not.

Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to, you can still be given supportive (palliative) care, with medicines to control any symptoms.

It is important that you ask your doctors and nurses any questions you have about your treatment. It is true that the hospital staff are busy, but the more you understand about your treatment, the easier it is for you and them.