Kaposi's sarcoma

Kaposi's sarcoma (KS) is a rare type of cancer that affects the skin and mouth. The lungs, liver, stomach, bowel and lymph nodes can also be affected. It can appear in several parts of the body at the same time.

The main symptom of KS is skin lesions. Other symptoms depend on which part of the body is affected.

KS is caused by a virus called human herpes virus 8 (HHV8). Most people who have this virus never get KS.

There are four types of KS. They are all more common in men than women. The main type is more common in people who have a weakened immune system because of HIV. Other types develop in:

  • people from Africa
  • older men of Mediterranean, Middle Eastern or Jewish descent
  • people whose immune system is weakened after an organ transplant.

Treatment is usually chemotherapy or radiotherapy, depending on which type of KS you have. Your cancer doctor or nurse can advise you on how to manage side effects. Some types of KS are slow growing and may not need treatment straightaway.

What is Kaposi's sarcoma (KS)?

Kaposi's sarcoma (KS) is a type of cancer that usually affects the skin and mouth. KS can also affect organs inside the body, such as:

  • the lungs
  • the liver
  • the stomach
  • the bowel
  • the lymph nodes. 

It can appear in several parts of the body at the same time.


Causes of Kaposi's sarcoma

KS is caused by a virus called human herpes virus 8 (HHV8), which is also known as Kaposi’s sarcoma herpes virus (KSHV). Most people who have this virus never get KS. People who have the virus are more likely to develop KS if their immune system is weakened or damaged.

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.


Types of Kaposi's sarcoma

There are four main types of KS. They are all more common in men than in women.

Epidemic or HIV-related Kaposi's sarcoma

Epidemic KS is the most common type of KS in the UK. People who have HIV may have a damaged immune system. If they also have HHV8, they have an increased risk of developing KS. KS is now less common in the UK because HIV is usually well controlled with treatment.

Classic Kaposi's sarcoma

Classic KS is rare. It is more common in older men of Mediterranean, Middle Eastern or Jewish descent.

This type of KS is normally only found in the skin, particularly on the lower legs and feet. It is a slow-growing cancer. People with early classic KS may not need treatment.

Endemic or African Kaposi's sarcoma

Endemic KS is found in parts of Africa where HHV8 is more common. 

Transplant-related Kaposi's sarcoma

People who have had an organ transplant rarely develop KS. This is because they need to take drugs that suppress their immune system (immunosuppressants). The drugs reduce the risk of rejecting the donated organ.


Signs and symptoms of Kaposi's sarcoma

The first symptom of Kaposi’s sarcoma (KS) is usually skin lesions. Occasionally, KS can also affect other parts of the body. When this happens, the symptoms will depend on the part of the body that’s affected. Some people may have general symptoms such as fever, weight loss and tiredness.

Skin lesions

These can range in colour. They may be pink, brown, brown-red or reddish purple. KS can appear as a raised bump (nodule) or a flat area on the skin.

The lesions can develop quickly. Although there may be a single area at first, it’s possible for more than one to appear. The lesions can join together to form a larger tumour. Any part of the skin can be affected, including the inside of the mouth.

Lymph nodes (glands)

KS can affect the lymph nodes. These are part of our lymphatic system, which helps us fight infection. If the lymph nodes are affected by KS, they may become swollen but this generally causes few symptoms.

Swelling in the arms and legs

KS can also cause damage to lymph vessels. This can lead to a build-up of fluid in the arms or legs. This is called lymphoedema.

Lung problems

KS in the lungs can cause breathlessness and a cough.

Stomach and bowel problems

KS may cause symptoms such as feeling sick (nausea) and being sick (vomiting).

Anaemia

Occasionally, the lesions may bleed slowly. Over a period of time, this may cause anaemia (low numbers of red blood cells).


Diagnosing Kaposi's sarcoma

If you have been diagnosed with HIV, your HIV specialist will usually arrange for you to have your symptoms investigated. However, some people may go to their GP with symptoms and will then be referred to a specialist for tests.

If you are diagnosed with KS but haven’t been tested for HIV, your doctor will discuss testing with you. Knowing whether you have HIV or not will help doctors decide how to treat the KS.

Your specialist may suspect you have KS just by looking at the skin lesions, but you will usually need a biopsy to confirm the diagnosis.

Biopsy

You will usually have this done as an outpatient. Your doctor or nurse will remove a small piece of the lesion, which will then be looked at under a microscope. The area may be sore for a few days, so you may need to take some painkillers.

Further tests

You may have further tests to check whether there is KS anywhere else in your body. Your doctor will explain about any tests you need.

Tests that look inside the body

The doctor or specialist nurse may look for KS inside the body. They will use a thin flexible tube with a camera at the end. The tube has a small cutting tool on the end. This 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: 

  • If the camera looks inside your lungs it is called a bronchoscopy
  • If the camera looks inside your gullet (oesophagus) and stomach it is called an endoscopy

Before the test you may be given a sedative. This is to help you relax and make you feel sleepy.

CT (computerised tomography) scan

A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and takes 10 to 30 minutes. It can help show whether there are any signs of KS in other parts of the body. CT scans use small amounts of radiation, which will be very unlikely to harm you or anyone you come into contact with.

You will be asked not to eat or drink for at least four hours before the scan.

You may be given a drink or injection of a dye that allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. If you are allergic to iodine or have asthma, you could have a more serious reaction to the injection. It’s important to let your doctor know about these things beforehand.


Treating Kaposi's sarcoma

The type of treatment you have will depend on:

  • the type of KS you have
  • the number of lesions you have
  • where the lesions are
  • your general health.

Epidemic or HIV-related Kaposi’s sarcoma

You and your specialist will usually consider different factors before making a decision about treatment. These include how well you are, how well your immune system is working and whether you have general symptoms.

If you have early-stage KS and have not had treatment for HIV, you will usually be given drug treatment for HIV. This is called combination Anti-Retroviral Therapy (cART). cART works by reducing the level of HIV in the body and improving your immunity. Once treatment with cART is started, KS often gets better or disappears. But this can take some months to happen.

If the skin lesions are causing distress or other problems during this time,  a low dose of radiotherapy can be given to shrink them.

Sometimes KS is more advanced by the time it is diagnosed. In this situation you may be offered chemotherapy. Chemotherapy is used if:

  • the lungs, stomach, bowel or mouth are affected
  • the lesions have become broken or are bleeding (ulcerated)
  • the KS is causing swollen limbs
  • you are already having treatment for HIV when KS is diagnosed.

Classic Kaposi’s sarcoma

Classic KS may not need to be treated straight away. This is because it is slow-growing and may not cause any problems. If classic KS begins to grow or spread more quickly, radiotherapy and chemotherapy can be used.

Endemic or African Kaposi’s sarcoma

This type of KS is usually treated with chemotherapy.

Transplant Kaposi’s sarcoma

This type of KS can sometimes be controlled by stopping or switching the immunosuppressant drugs. If this doesn’t work, you may need treatment with chemotherapy or radiotherapy.

Clinical trials

Research into new ways of treating KS is going on all the time. Cancer doctors use clinical trials to assess new treatments. Your doctor or specialist nurse can talk with you about any trials that might be right for you.


Radiotherapy for Kaposi's sarcoma

Radiotherapy uses high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells.

Radiotherapy can reduce signs of KS on the skin. Small lesions may fade completely. Larger and deeper lesions may become smaller and flatter. If KS is affecting organs inside the body, radiotherapy also helps improve symptoms such as swelling, pain and bleeding.

The treatment is given as short sessions (fractions) in the hospital radiotherapy department. Each treatment takes 10 to15 minutes. For small areas of KS, you may need only one treatment. Larger areas may need a number of sessions over a few weeks. The number of treatment sessions you will need depends on your situation. Your doctor will discuss the treatment with you.


Side effects of radiotherapy for Kaposi's sarcoma

Radiotherapy for KS can cause side effects. Serious side effects are uncommon because the dose of radiotherapy given is usually low. Your doctor or specialist nurse will explain the side effects you are likely to get. The side effects will depend on the part of the body that is being treated.

Skin changes

Radiotherapy to the skin can cause the skin to become sore. People with pale skin may notice it reddening. People with darker skin may find that their skin becomes darker. You will be given instructions on looking after your skin during treatment.

After treatment, you will need to protect the skin in the treated area from strong sunshine for at least a year:

  • Use a suncream with a high sun protection factor (SPF) of at least 30.
  • Wear close-weave clothing.
  • Use a wide-brimmed hat if your head and neck area has been treated.

It’s important to remember that you can burn through clothing if you are out in hot sun for a long time.

Tiredness

You may feel tired for some weeks after treatment is over. Get plenty of rest but balance this with some gentle exercise, such as short walks. This will give you more energy and help to keep your muscles working.

Late effects

The side effects of radiotherapy will gradually disappear once your treatment has finished. A small number of people develop late effects of radiotherapy months or years later. Your doctor or specialist nurse will discuss any possible late effects with you.


Chemotherapy for Kaposi's sarcoma

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It can be given in different ways to treat Kaposi's sarcoma.

Chemotherapy injected into the lesion

For small KS lesions that only affect the skin, chemotherapy can be injected directly into the lesions. This is known as intralesional chemotherapy. It may be used instead of radiotherapy if areas or types of skin may darken with radiotherapy, for example, on your face. Intralesional chemotherapy can also be used to treat tumours inside the mouth.

The chemotherapy drug vinblastine (Velbe®) is often used. It works best on smaller lesions. Intralesional chemotherapy can shrink skin lesions and make them lighter in colour. In some people, lesions may disappear almost completely.

Chemotherapy injected into a vein

When chemotherapy is given into a vein, the drugs travel in the bloodstream and reach KS in different parts of the body. This is known as intravenous chemotherapy.

Chemotherapy is given into a vein if:

  • there are lots of lesions on large areas of skin
  • KS affects organs inside the body.

Chemotherapy into the vein is given as a session of treatment (cycle), usually over a few hours. This is followed by a rest period of a few days. This allows your body to recover from any side effects before you have your next cycle of chemotherapy. Your specialist will be able to tell you how many cycles you will need.

Liposomal chemotherapy

If you are having chemotherapy injected into a vein, this type of drug would normally be used first. The molecules of the chemotherapy drug are wrapped inside a fat-based coating called a liposome. The liposomes travel to the tumour through the blood stream, where they release the chemotherapy drug. Liposomal chemotherapy has fewer side effects than intravenous chemotherapy. This means treatment can be given over a longer period.

The liposomal chemotherapy drugs that are commonly used to treat KS are:

These are usually given as a drip (infusion) into a vein every two to three weeks.

Other chemotherapy drugs which may be used to treat KS are:


Side effects of chemotherapy for Kaposi’s sarcoma

We explain the most common side effects of chemotherapy here but we don’t include all the rare ones that are unlikely to affect you.

You may get some of the side effects we mention but you are very unlikely to get all of them. Always tell your doctor or nurse about the side effects you have.

Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.

Serious and life-threatening side effects

Sometimes cancer drugs can result in very serious side effects, which rarely may be life-threatening. Your cancer doctor and nurse can explain the risk of these side effects to you.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.

Risk of infection

Chemotherapy can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. Your white blood cells start to reduce seven days after treatment and are usually at their lowest 10 to 14 days after. When the number of white blood cells is low, it’s called neutropenia.

Contact the hospital straight away on the contact number you’ve been given if:

  • You develop a high temperature, which may be over 37.5˚C (99.5˚F) or over 38˚C (100.4˚F) depending on the hospital’s policy. Follow the advice that you have been given by your chemotherapy team if you suddenly feel unwell, even with a normal temperature.
  • You have symptoms of an infection, including feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.

The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.

Bruising or bleeding

Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding you can’t explain. This includes: 

  • nosebleeds
  • bleeding gums
  • blood spots
  • rashes on the skin. 

Some people may need a drip to give them extra platelets (platelet transfusion).

Anaemia (low number of red blood cells)

Chemotherapy can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells (blood transfusion).

Feeling sick (nausea)

This may happen in the first few days after chemotherapy. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started.

If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.

Soreness and redness of the palms of the hands and soles of the feet

This may happen if you are being treated with liposomal chemotherapy. It is called palmar-plantar or hand-foot syndrome. It gets better when treatment ends. Your doctor or nurse can give you advice and prescribe creams to improve the symptoms. It can help to keep your hands and feet cool, and to avoid tight-fitting socks, shoes and gloves.

Sore mouth

Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures morning and night, and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.

Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.

Hair loss

Some chemotherapy drugs can make your hair thin or fall out. You can ask your doctor whether the drugs you're taking are likely to cause hair loss. If your hair falls out, it will start to grow back again when your treatment finishes.

Skin reaction

Chemotherapy given directly into the skin lesion (intralesional chemotherapy) may cause redness and swelling in that area. The skin may break down a little before it begins to heal.

Chemotherapy into a vein (intravenous) can also cause swelling, redness or pain if it leaks out of the vein. This is known as extravasation. Tell your nurse or doctor straight away if this happens.

Tiredness (fatigue)

You may feel tired and generally weak. Allow yourself plenty of time to rest and try not to overdo things.


Living with Kaposi's sarcoma

Your feelings

Most people feel upset when they are told that they have KS. You’re likely to have many different emotions and feelings. Reactions differ from one person to another. There’s no right or wrong way to feel.

Partners, family and friends often have similar feelings and may also need support.

Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to family or friends, while others prefer to keep their feelings to themselves. Some hospitals have their own emotional support services with trained staff. Or you may prefer to talk to someone outside the hospital environment such as a counsellor.

There is no right or wrong way to cope, but help is available if you need it. Our cancer support specialists can give you information and support to help you cope.

HIV/AIDS

Being diagnosed with KS can be difficult, especially when you are already coping with HIV. For some people, KS may be the first sign that they have HIV. They may find it hard to cope with 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/AIDS, including Positively UK and the Terrence Higgins Trust. Both of these organisations offer counselling, information and support for people living with HIV/AIDS.

Skin lesions

Coping with skin lesions can be difficult, especially if they’re 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.

Lymphoedema

KS 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 can’t be reversed. But some treatments can reduce the swelling so it is kept to a minimum. Your doctor can refer you to specialist nurses who run lymphoedema clinics where you can be treated.


Resources and organisations

You can find links to additional resources or to other organisations that may be able to help below:

British Association of Skin Camouflage

The British Association of Skin Camouflage provides a cosmetic camouflage service to teach people the techniques of applying creams effectively.

Changing Faces

Changing Faces is a UK-based charity that gives support and information to people with disfigurements to the face, hands or body.

Positively UK

Positively UK provides peer support services, including men's and women's support groups, support groups for African people, counselling, a children and family service, and a helpline for people living with HIV.

Terrence Higgins Trust

The Terrence Higgins Trust offers advice and information on all aspects of HIV/AIDS, including counselling and support, health promotion and benefits advice through its telephone helpline.

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