Kaposi's sarcoma (KS or Kaposi’s) is a type of cancer that usually affects the:
- lining of the mouth.
It can also affect organs inside the body, such as the:
- lymph nodes.
It can develop in several parts of the body at the same time.
Kaposi’s sarcoma is caused by a virus called human herpes virus 8 (HHV8).
This is also known as Kaposi’s sarcoma-associated herpes virus (KSHV). Most people who have this virus never get Kaposi’s, because their immune system can control it. The virus is more likely to cause Kaposi’s in people who have a weakened or damaged immune system.
Our immune system is made up of tissues and organs that work together to protect us against infections. It can be weakened or damaged in different ways, for example by HIV or after an organ transplant. HIV is a virus that weakens the immune system.
There are four main types of Kaposi’s. They are all more common in men than in women.
Epidemic or HIV-related Kaposi's sarcoma
Although epidemic Kaposi’s is the most common type in the UK it is now less common. This is because HIV is usually well controlled with treatment.
People who have HIV may have a damaged immune system. If they also have HHV8, they have an increased risk of developing Kaposi’s.
Classic Kaposi's sarcoma
Classic Kaposi’s sarcoma is rare. It is more common in older men of Mediterranean, East Asian or Jewish descent.
This type of Kaposi’s is normally only found in the skin, particularly on the lower legs and feet. It is a slow-growing cancer. People with early classic Kaposi’s may not need treatment.
Endemic or African Kaposi's sarcoma
Endemic Kaposi’s sarcoma is found in parts of Africa where HHV8 is more common. It usually develops in younger people, usually under the age of 40.
Transplant-related Kaposi's sarcoma
This is a very rare type of Kaposi’s. It develops in people who have had an organ transplant. This is because they need to take drugs that suppress their immune system (immunosuppressants). These drugs reduce the risk of the body rejecting the donated organ.
Transplant-related Kaposi’s sarcoma is also known as iatrogenic Kaposi’s sarcoma or acquired Kaposi’s sarcoma.
The first symptom of Kaposi’s is usually a coloured spot on the skin (skin lesion). Kaposi’s sarcoma skin lesions can range in colour. They may be pink, brown, brown-red or reddish purple.
The lesions can appear as a:
- flat area on the skin – called a patch
- slightly raised area – called a plaque
- raised bump – called a nodule.
The lesions can develop anywhere on the skin, including inside the mouth. They are more commonly seen on the legs, face and groin area.
The lesions may develop quickly. Although there may be a single lesion at first, it is possible for more than one to appear. The lesions can join together to make a bigger tumour.
You may have general symptoms, such as a fever, weight loss and tiredness. Other symptoms depend on where the sarcoma in the body. For example, you may have these symptoms:
- If the lymph nodes are affected, you may have swollen lymph nodes.
- If the lymph vessels are damaged, you may have a build-up of fluid in the arms, legs, face and genitals called lymphoedema.
- If it is in the lungs, you may have breathlessness and a cough.
- If it is in the stomach and bowel, you may have diarrhoea and abdominal pain.
Sometimes, the lesions may bleed slowly. Over time, this may cause low numbers of red blood cells (anaemia). This can cause symptoms such as tiredness and breathlessness.
If you have been diagnosed with HIV, your HIV specialist will usually arrange for you to have any symptoms of Kaposi’s investigated. But you may go to your GP with symptoms that could be Kaposi’s and be referred to a specialist for tests.
If you are diagnosed with Kaposi’s but have not been tested for HIV, your doctor will discuss testing with you. Knowing whether you have HIV will help doctors decide how to treat the Kaposi’s.
Your specialist may think you have Kaposi’s just by looking at the skin lesions. But you will usually need a biopsy to confirm the diagnosis. You may have further tests to check whether the cancer has spread to other areas of the body. Your doctor will explain any tests you need.
Your doctor or nurse may take a sample of tissue from the lesion. The sample is looked at under a microscope. This is called a biopsy. You usually have this done as an outpatient. The area may be sore for a few days, so you may need to take some painkillers.
Your doctor or specialist nurse may look for Kaposi’s inside the body. They will use a thin, flexible tube with a camera at the end, called an endoscope. It also has a small cutting tool that allows the doctor or nurse to take biopsies of any abnormal areas.
This test is called different things, depending on what part of the body it looks at:
The type of treatment you have depends on:
- the type of Kaposi’s you have
- the number and size of lesions you have
- where the lesions are
- your general health.
Unlike other types of sarcoma, Kaposi’s is not usually treated by a specialist sarcoma team. Treatment is usually given by doctors and nurses who specialise in treating the type of Kaposi’s you have and the area of the body it is in. This may include specialists who treat:
- skin conditions – these specialists are called dermatologists
- infectious diseases, such as HIV and AIDS
- cancer – these specialists are called oncologists.
Treatment for Kaposi’s sarcoma may include:
Radiotherapy uses high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells. This is often used to treat Kaposi’s skin lesions. If Kaposi’s is affecting organs inside the body, radiotherapy might also be used to improve symptoms such as swelling, pain and bleeding. We have more general information about having radiotherapy and about radiotherapy to treat Kaposi’s skin lesions.
Chemotherapy for skin lesions
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Chemotherapy can be injected directly into small skin lesions (called intralesional chemotherapy). We have more about this in our information about treating Kaposi’s skin lesions.
Chemotherapy can also be given into a vein to treat larger areas of skin lesions or Kaposi’s inside the body. This is called systemic chemotherapy. The chemotherapy drugs that are commonly used to treat Kaposi’s are liposomal daunorubicin (DaunoXome®) or liposomal doxorubicin (Caelyx®, Myocet®). Liposomal drugs have fewer side effects than standard chemotherapy. This means treatment can be given over a longer period. These are usually given every 2 to 3 weeks. Other chemotherapy drugs may sometimes be used. Your doctor or specialist nurse can give you more information. We have more information about having chemotherapy and side effects of chemotherapy.
Treating epidemic or HIV related Kaposi's sarcoma
You and your specialist will usually consider different things before making a decision about treatment. These include:
- how well you are
- how well your immune system is working
- whether you have symptoms.
Combination anti-retroviral therapy
If you have early-stage Kaposi’s and have not had treatment for HIV, you are usually given drug treatment for HIV. This is called combination anti-retroviral therapy (ART). ART works by reducing the level of HIV in the body and improving your immunity. When treatment with ART starts, Kaposi’s often gets better or disappears. But this can take several months to happen.
If Kaposi’s is more advanced, you may be offered chemotherapy that treats the whole body (systemic chemotherapy). Chemotherapy is used if:
- the lungs, stomach, bowel or mouth are affected
- the lesions have become broken or are bleeding (ulcerated)
- the Kaposi’s is causing swollen limbs
- you are already having treatment for HIV when Kaposi’s is diagnosed.
Treating classic Kaposi's sarcoma
Classic Kaposi’s may not need to be treated straight away. This is because it is slow-growing and may not cause any problems. If classic Kaposi’s starts to grow or spread more quickly, radiotherapy and chemotherapy can be used.
Treating endemic or African Kaposi's sarcoma
This type of Kaposi’s is usually treated with chemotherapy.
Treating transplant-related Kaposi’s sarcoma
This type of Kaposi’s can sometimes be controlled by stopping or changing the immunosuppressant drugs you are taking. If this does not work, you may need treatment with chemotherapy or radiotherapy.
Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.
Macmillan is also here to support you. If you would like to talk, you can:
- call the Macmillan Support Line on 0808 808 00 00
- chat to us online
- visit our soft tissue sarcomas forum to talk with people who have been affected by Kaposi's sarcoma, share your experience, and ask an expert your questions.
Sarcoma UK offers support and information to anyone affected by sarcoma.
HIV and AIDS
Being diagnosed with Kaposi’s can be difficult, especially when you are already coping with HIV. For some people, Kaposi’s may be the first sign that they have HIV. They may find it hard to cope with having two new illnesses at the same time.
Coming to terms with this can be very difficult. There are many organisations that offer help and support to people with HIV and AIDS, including Positively UK and the Terrence Higgins Trust. Both of these organisations offer counselling, information and support for people living with HIV and AIDS.
Coping with skin lesions
Coping with skin lesions can be difficult, especially if they are very visible. It may be possible to use skin camouflage to cover small, flat skin lesions and make them less noticeable. Some clinical nurse specialists, the British Association of Skin Camouflage, and the organisation Changing Faces offer a camouflage make-up service and can teach you how to apply it.
Coping with lymphoedema
Kaposi’s can damage lymph vessels, which can lead to a build-up of fluid in the arms or legs (lymphoedema). Lymphoedema is a chronic swelling. This means it never goes way, because the causes cannot be reversed. But some treatments can reduce the swelling.
Your doctor can refer you to specialist lymphoedema clinics where you can be treated.