Kaposi's sarcoma

Kaposi's sarcoma (KS or Kaposi’s) 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 develop in several parts of the body at the same time.

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

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

There are four types of Kaposi’s. 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 Kaposi’s you have. Your cancer doctor or specialist nurse can advise you on how to manage side effects. Some types of Kaposi’s are slow growing and may not need treatment straight away.

What is Kaposi's sarcoma (KS)?

Kaposi's sarcoma (KS or Kaposi’s) is a type of cancer that usually affects the:

  • skin
  • lining of the mouth.

It can also affect organs inside the body, such as the:

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

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


Causes of Kaposi's sarcoma

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.


Types of Kaposi's sarcoma

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

Epidemic Kaposi’s is the most common type 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 Kaposi’s.

Epidemic Kaposi’s is now less common in the UK, because HIV is usually well controlled with treatment.

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.


Signs and symptoms of Kaposi's sarcoma

The first symptom of Kaposi’s is usually a coloured spot on the skin (skin lesion).

Other symptoms depend on where it is in the body. You may have general symptoms, such as a fever, weight loss and tiredness.

Skin lesions

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.

Other symptoms

Sometimes, Kaposi’s can affect other parts of the body. The symptoms depend on where it is 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.


Diagnosing Kaposi's sarcoma

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 then 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.

Biopsy

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.

Chest x-ray

You may have a chest x-ray to look for Kaposi’s in the lungs.

Tests to look inside the body

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:

  • If the camera looks inside the lungs, it is called a bronchoscopy.
  • If the camera looks inside the gullet (oesophagus) and stomach, it is called a gastroscopy.

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, which build up a three-dimensional picture of the inside of the body. 

The scan takes 10 to 30 minutes and is painless. 

It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with.

CT scan
CT scan

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You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. 

This may make you feel hot all over for a few minutes. 

It is important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection.

You will probably be able to go home as soon as the scan is over.


Treating Kaposi's sarcoma

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.

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.

Local treatment

If there are only a few skin lesions, in a small area of your body, you can have treatment directly to the lesions. This is called local treatment. It can help you look and feel better, but it will not stop new lesions developing.

Local treatments include:

  • a low dose of radiotherapy
  • an injection of a small amount of chemotherapy into the lesion (intralesional chemotherapy)
  • surgery.

Systemic chemotherapy

Sometimes Kaposi’s is more advanced when it is diagnosed. In this situation, 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.

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.

Endemic or African Kaposi’s sarcoma

This type of Kaposi’s is usually treated with chemotherapy.

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.

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 is mainly used to reduce signs of Kaposi’s on the skin. It may make small lesions fade completely. Larger and deeper lesions may become smaller and flatter. If Kaposi’s is affecting organs inside the body, radiotherapy might be used to 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 to 15 minutes. For small areas of Kaposi’s, you may only need one session of treatment. For bigger areas, you may need a number of sessions over a few weeks. The number of treatment sessions you need depends on your situation. Your doctor will discuss the treatment with you.

Side effects of radiotherapy for Kaposi's sarcoma

Radiotherapy for Kaposi’s 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. This depends on the area 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 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 the sun:

  • Use a sun cream with a high sun-protection factor (SPF) of at least 30.
  • Wear close-weave clothing.
  • Wear a wide-brimmed hat if your head and neck area has been treated.
  • Remember 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 finishes. Get plenty of rest, but balance this with some gentle exercise, such as short walks. This will give you more energy and help keep your muscles working.

Late effects of radiotherapy

The side effects of radiotherapy will slowly disappear after your treatment finishes. 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 Kaposi’s lesions that only affect the skin, chemotherapy can be injected directly into the lesions. This is called intralesional chemotherapy. It may be used:

  • instead of radiotherapy if radiotherapy could affect your appearance – for example, if the lesion is on your face and radiotherapy may cause the skin to darken
  • to treat tumours inside the mouth.

The most common chemotherapy drug used is vinblastine (Velbe®). 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.

Side effects of intralesional chemotherapy include swelling, pain and blistering in the area that was injected.

Chemotherapy injected into a vein

When chemotherapy is given into a vein, the drugs travel in the bloodstream and reach Kaposi’s in different parts of the body. This is called intravenous chemotherapy. It may be used if:

  • there are lots of lesions on large areas of skin
  • Kaposi’s 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 2 weeks. This allows your body to recover from any side effects before you have your next cycle of chemotherapy. Your specialist can tell you how many cycles you need.

The chemotherapy drugs that are commonly used to treat Kaposi’s belong to a group called liposomal chemotherapy. The molecules of the chemotherapy drug are wrapped in a fat-based coating called a liposome. Liposomal chemotherapy has fewer side effects than standard chemotherapy. This means treatment can be given over a longer period.

The two main liposomal chemotherapy drugs used are:

These are usually given as a drip (infusion) into a vein every 2 to 3 weeks.

Other chemotherapy drugs may sometimes be used. Your doctor or specialist nurse can give you more information.

Side effects of chemotherapy for Kaposi’s sarcoma

Chemotherapy can cause side effects, but they can often be well controlled with medicines. The side effects depend on the drug or combination of drugs you are given. Your doctor or nurse will explain what to expect. There are different ways to manage or treat side effects. Most side effects will get better after your treatment finishes.

Risk of infection

Chemotherapy drugs can reduce the number of white blood cells in your blood during treatment. This makes you more likely to get an infection. It is very important to contact the hospital straight away if you have any signs of infection. Your doctor or nurse will give you advice about what to do if this happens.

Bruising and 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 cannot 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).

Soreness and redness of the palms or soles

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 finishes. 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.

Other side effects include:

Let your doctor or nurse know about any side effects during treatment. They can give you advice and help to reduce these.

We have more information about coping with the side effects of chemotherapy.


Clinical trials

Research into new ways of treating Kaposi’s is happening all the time. Cancer doctors use clinical trials to assess new treatments.

Before a trial can happen, it must be approved by an ethics committee, which protects the interests of the patients taking part.

Your doctor may ask you to take part in a clinical trial. If you decide to take part in a trial, your doctor must discuss the treatment with you. This is so you fully understand the trial and what it means to take part. You can decide not to take part, or to withdraw from a trial at any stage. You will still receive the best standard treatment available.


Living with Kaposi's sarcoma

Your feelings

You may have many emotions, including anxiety, anger and fear. These are all normal reactions. They are part of the process many people experience when dealing with cancer.

Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to family or friends. Others may prefer to get help from people outside their situation.

Some people prefer to keep their feelings to themselves. There is no right or wrong way to cope, but help is there if you need it. Our cancer support specialists can give you information about counselling in your area.

Other organisations can also help you cope with your feelings, including Sarcoma UK. They provide information and support via a support line run by specialist sarcoma nurses. Call 0808 801 0401 or email supportline@sarcoma.org.uk

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

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.

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.

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.

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