Treatment for Kaposi's sarcoma

Mild cases of Kaposi's sarcoma may not need to be treated. It may be possible to use skin-camouflage to cover any skin lesions. However, if the lesions or lumps are causing embarrassment and distress, treatment may be recommended.

Your doctor is more likely to suggest that you have treatment if your KS is affecting internal organs, or if there are many skin lesions. If you have HIV that is not very well controlled, your specialist may also recommend that you start anti-HIV treatment.

The type of treatment used will depend on a number of different factors, including the size and position of the tumours and your general health.

• Classic KS does not usually require any treatment, although radiotherapy is sometimes used for larger or easily visible lesions.
• Endemic or African KS is often treated with chemotherapy.
• Treatment of Aids-related KS is often affected by the person's general health. As the immune system has already been weakened by the illness, extra care has to be taken to ensure that any side effects of treatment are not going to make your health become worse. For most people with Aids-related KS the treatment will include highly active antiretroviral therapy (HAART) which reduces the level of the HIV virus in the body and improves immunity.
• Transplant-related KS, caused by immunosuppressant drugs, can sometimes be controlled by stopping or reducing these drugs.

If you have any questions about your treatment, don't be afraid to ask your doctor or the nurse looking after you. It often helps to make a list of questions for your doctor and to take a close friend or relative with you to your appointment.

In most hospitals a team of specialists will decide the treatment that is best for you. This multidisciplinary team (MDT) will often include:

• a virologist – a doctor that specialises in treating people with viruses
• oncologists – doctors who have experience treating KS using chemotherapy and radiotherapy
• specialist nurses who give information and support
• radiologists who help to analyse x-rays
• an HIV specialist.

The MDT may also include a number of other healthcare professionals, such as a:

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

Together they will be able to advise you on the best course of action and plan your treatment taking into account a number of factors. These include your age, general health, and the size and position of the tumours.

Remember to ask questions about any aspects that you do not understand or feel worried about. You may find it helpful to discuss the benefits and disadvantages of each option with your doctor, specialist nurse, or with the nurses on our cancer information and support service.

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 possible other treatments that may be available
• 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 are 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.

People 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 important 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.

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 willing to refer you to another specialist for a second opinion, if you feel it will be helpful. The second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will give you useful information.

If you decide to have 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.