There are 4 main types of Kaposi’s sarcoma. Kaposi’s sarcoma is more common in men than in women. It is caused by a virus called human herpes virus 8 (HHV8). The main types are:
HIV-related Kaposi’s sarcoma
HIV is a virus that attacks the immune system. Your immune system helps protect you from infection and disease. People who have HIV may have a damaged immune system. If they also have human herpes virus 8 (HHV8) they have an increased risk of developing Kaposi’s.
HIV-related Kaposi’s is the most common type of KS in the UK. But it is now much less common because anti-retroviral drugs help keep HIV under control.
Classic Kaposi’s sarcoma
Classic Kaposi’s sarcoma is rare. It is more common in older men in Mediterranean or Middle Eastern countries where human herpes virus ( the HHV8) virus is more common. 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.
Endemic Kaposi’s sarcoma
Endemic Kaposi’s sarcoma is found in parts of Africa where HHV8 is more common. It usually develops in younger people, under the age of 40.
Transplant-related Kaposi’s sarcoma
This type may develop in people who have had an organ transplant. This is because they take drugs that suppress their immune system (immunosuppressants) to reduce the risk of their body rejecting the donated organ. It 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.
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.
If you have been diagnosed with HIV and have possible symptoms of Kaposi’s sarcoma your HIV specialist will usually arrange for you to have tests. Or you may go to your GP with symptoms and be referred to a specialist for tests.
Your specialist may think you have Kaposi’s sarcoma just by looking at the skin lesions. But you will need a biopsy to be sure.
If you are diagnosed with Kaposi’s sarcoma but have not been tested for HIV, your doctor and nurse will talk to you about having a test. Knowing if you have HIV will help doctors decide how to treat the Kaposi’s.
You may also have further tests to check whether the cancer has spread to other areas of the body. Your doctor will explain any tests you need.
The doctor uses a small round cutting instrument to remove a small sample of skin. This is called a biopsy. The sample will be examined under a microscope. Before the biopsy the doctor will give you an injection of local anaesthetic to numb the area. You can have the biopsy done in the outpatient department. The area may be sore for a few days, so you might need to take some painkillers.
An endoscope is a thin, flexible tube with a camera at the end. Your doctor or specialist nurse may use it to look for Kaposi’s sarcoma inside the body. They can take biopsies of any abnormal areas during it. It can be used to look inside the lungs, which is called a bronchoscopy. Or you might have an endoscope to look inside the gullet and stomach.
A team of specialists meets to discuss the best possible treatment plan for you. This is called a multidisciplinary team (MDT).
Treatment of Kaposi’s sarcoma depends on different things, including:
- the type of Kaposi’s you have
- the number and size of your lesions
- where the lesions are
- your general health.
Treatment is usually given by doctors and nurses who specialise in treating the type of Kaposi’s you have. Or they may be experts in the area of the body where the Kaposi’s sarcoma is. This may include a:
- dermatologist – a specialist who treats skin conditions
- specialist in treating infectious diseases, such as HIV
- oncologist – a cancer doctor.
Your doctor and nurse will talk to you about the best treatment for you. They can talk to you about things to think about when making treatment decisions.
Treating Kaposi’s sarcoma skin lesions
You often have treatments directly to the lesions. This is called local treatment. The most common treatment for early skin lesions is a cream applied directly to the skin. This could be:
- an immunotherapy cream called imiquimod (Aldara®), which is used to treat some skin cancers, is the most common treatment
- a cream called alitretinoin gel 0.1%, which is is a type of retinoid cream (like vitamin A), is sometimes used.
Local treatments help improve lesions you already have. But they do not stop new lesions developing. Sometimes other treatments are used to treat skin lesions, but this is not common. These may include:
Chemotherapy into the skin lesion
Sometimes chemotherapy drugs are injected into the skin lesions. This is called intralesional chemotherapy.
It can shrink skin lesions and make them lighter in colour. Sometimes it can make them disappear completely. The side effects include swelling, pain and blistering around the injection area. This type of chemotherapy does not cause side effects in the rest of the body.
Radiotherapy may be used to treat skin lesions. The dose given is usually low, so it does not cause many side effects. You may get skin changes in the treated area and feel tired. After radiotherapy finishes, side effects gradually improve.
Other treatments for Kaposi’s sarcoma
Chemotherapy into a vein (intravenous) or as capsules can be given to treat Kaposi’s sarcoma inside the body. It might also be used if there are lots of skin lesions on large areas of skin, or if lesions break or bleed (become ulcerated).
You may have 1 of the following drugs:
- A drug called vinorelbine, which you take as capsules.
- Liposomal doxorubicin (Caelyx®), usually every 3 weeks. Liposomal drugs have fewer side effects than standard chemotherapy. This means treatment can be given for longer.
- A drug called paclitaxel every 2 to 3 weeks.
Radiotherapy uses high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells. It is not commonly used to treat Kaposi’s sarcoma.
If Kaposi’s sarcoma is affecting organs inside the body, radiotherapy might be used to improve symptoms such as swelling, pain and bleeding. This is called palliative radiotherapy.
Your treatment will also depend on the type of Kaposi’s sarcoma you have.
Treating HIV-related Kaposi’s sarcoma
Before making a decision about treatment, you and your specialist doctor will consider:
- how well you are
- how well your immune system is working
- whether you have symptoms.
Treatments may include:
Combination anti-retroviral therapy
If you have early-stage Kaposi’s and have not had treatment for HIV, you usually start combination anti-retroviral therapy (CART). It reduces the level of HIV in the body and improves your immunity. When treatment starts, Kaposi’s often gets better or disappears. But this can take several months to happen.
If there are only a few skin lesions in a small area of your body, you can have treatments directly to the lesions (local treatment) using creams.
You may be offered Chemotherapy that treats the whole body if Kaposi's is more advanced, or you are already having HIV treatment when it is diagnosed. Chemotherapy is used if skin lesions are broken or bleeding (ulcerated). Or if your limbs are swollen or Kaposi's is affecting the lungs, stomach, bowel or mouth.
Treating classic or endemic Kaposi's sarcoma
Classic or endemic Kaposi’s may not need to be treated straight away. This is because it grows slowly and may not cause any problems. Chemotherapy or local treatments may be used if classic Kaposi’s:
- starts to grow or spread more quickly
- affects a number of areas.
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.
You will have regular check-up appointments at the hospital. Your doctor or specialist nurse will examine you and ask about any side effects or symptoms.
Always tell them about any new symptoms or side effects that are not improving.
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 2 new illnesses at the same time. You will be given a lot of support from your specialist team.
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.
You can learn how to apply camouflage make-up from Changing Faces.
Some clinical nurse specialists can also give you advice about using camouflage make-up.
Kaposi’s can damage lymph vessels, which can lead to a build-up of fluid in the arms or legs called lymphoedema. Lymphoedema is a chronic swelling. This means it never goes away, because the cause cannot be reversed. But some treatments can reduce the swelling.
Your doctor can refer you to specialist lymphoedema clinics for treatment.
Changes to your appearance caused by skin lesions or lymphoedema can affect how you think and feel about your body. Talk to your nurse if you have concerns about your body image.
Cancer and its treatment can sometimes have an effect on your sex life. If you are worried about this talk to your doctor or nurse. You can read about things that may help in our information on cancer and sex.
Well-being and recovery
Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.
Making small changes such as eating well and keeping active can improve your health and well-being and help your body recover.
Organisations such as Sarcoma UK can provide information and support. Cancer52 works to improve the quality of life for people with rare cancers. Macmillan is also here to support you. If you would like to talk, you can:
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by senior medical editor Fiona Cowie, Consultant Clinical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
Below is a sample of the sources used in our Kaposi's sarcoma information. If you would like more information about the sources we use, please contact us at firstname.lastname@example.org
Lebbe C et al. Diagnosis and treatment of Kaposi's sarcoma: European consensus-based interdisciplinary guideline (EDF/EADO/EORTC). European Journal of Cancer, 2019; Volume 114, p117-127 (accessed May 2022).
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