Kaposi’s sarcoma

What causes Kaposi's sarcoma?

Kaposi's sarcoma is caused by a virus called human herpes virus 8 (HHV8), also known as Kaposi's sarcoma-associated herpes virus (KSHV).

Most people who carry this virus never develop Kaposi's sarcoma, because their immune system keeps it under control. The virus is more likely to cause Kaposi's sarcoma in people whose immune system is weakened or damaged.

The immune system is made up of tissues and organs that work together to protect us from infection. 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've been diagnosed with HIV and have possible symptoms of Kaposi's sarcoma, your HIV specialist will usually arrange tests for you. Or you may first go to your GP with symptoms and be referred on to a specialist for tests.

Your specialist may suspect Kaposi's sarcoma just by looking at the skin lesions, but you'll need a biopsy to be sure.

If you're diagnosed with Kaposi's sarcoma but haven't been tested for HIV, your doctor and nurse will talk to you about having a test. Knowing whether you have HIV helps doctors decide how to treat the Kaposi's sarcoma.

You may also need further tests to check whether the cancer has spread to other parts of the body. Your doctor will explain any tests you need.

Skin biopsy

During a skin biopsy, a doctor uses a small round cutting instrument to remove a small sample of skin. This is called a biopsy, and the sample is examined under a microscope.

Before the biopsy, the doctor will give you an injection of local anaesthetic to numb the area. The biopsy can be done in the outpatient department, and the area may stay sore for a few days afterward, so you might need to take some painkillers.

Chest X-ray

You may have a chest X-ray to check for Kaposi's sarcoma in the lungs.

Endoscopy

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, and they can take biopsies of any abnormal areas during the procedure.

An endoscopy used to look inside the lungs is called a bronchoscopy. You might instead have an endoscope passed down to look inside the gullet and stomach.

CT scan

A CT scan takes a series of X-rays that build up a 3D picture of the inside of the body.

Treatment for Kaposi’s sarcoma

A team of specialists will meet 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, like 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.

Treatment for Kaposi’s sarcoma skin lesions

You’ll 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®) – is used to treat some skin cancers, and is the most common treatment
• a cream called alitretinoin gel 0.1%
• a type of retinoid cream (like vitamin A) – this is sometimes used

Local treatments help improve lesions you already have. But they don’t stop new lesions developing.

Sometimes other treatments are used to treat skin lesions, but this isn’t common.

Surgery

Surgery is sometimes used to remove small skin lesions.

Cryotherapy

Cryotherapy destroys the cancer cells by freezing them with liquid nitrogen.

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 doesn’t cause side effects in the rest of the body.

Radiotherapy

Radiotherapy may be used to treat skin lesions. The dose given is usually low, so it doesn’t cause many side effects.

You may get skin changes in the treated area and feel tired. After radiotherapy finishes, side effects gradually improve.

Radiotherapy uses high-energy X-rays to destroy cancer cells, while doing as little harm as possible to normal cells. It’s 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 like swelling, pain and bleeding. This is called palliative radiotherapy.

Your treatment will also depend on the type of Kaposi’s sarcoma you have.

Other treatments for Kaposi’s sarcoma

Chemotherapy

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:

• vinorelbine – you’ll take as capsules
• pegylated liposomal doxorubicin – usually every 3 weeks
• paclitaxel – every 2 to 3 weeks

Liposomal drugs have fewer side effects than standard chemotherapy. This means treatment can be given for longer.

You may be offered chemotherapy that treats the whole body if:

• Kaposi’s is more advanced, or
• you’re already having HIV treatment when it’s 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
• mouth

Treatment for 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

Combination anti-retroviral therapy

If you have early-stage Kaposi’s and haven’t had treatment for HIV, you’ll usually start combination anti-retroviral therapy (CART).

This 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.

Local treatments

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.

Treatment for 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

Transplant-related Kaposi’s sarcoma can sometimes be controlled by stopping or changing the immunosuppressant drugs you’re taking. If this doesn’t work, you may need treatment with chemotherapy or radiotherapy.

Living with Kaposi’s sarcoma

You’ll 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’re 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’ll be given a lot of support from your specialist team.

There are many organisations that offer counselling, information and support to people with HIV and AIDS. This includes Positively UK and the Terrence Higgins Trust.

Coping with 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.

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.

Lymphoedema

Kaposi’s can damage lymph vessels, which can lead to a build-up of fluid in the arms or legs. This is called lymphoedema.

Lymphoedema is a chronic swelling. This means it never goes away, because the cause can’t be reversed. But some treatments can reduce the swelling.

Your doctor can refer you to specialist lymphoedema clinics for treatment.

Body image

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.

Sex life

Cancer and its treatment can sometimes have an effect on your sex life. If you’re worried about this, talk to your doctor or nurse.

Macmillan Cancer Support have more information on cancer and sex.

Wellbeing and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Making small changes like eating well and keeping active can improve your health and wellbeing and help your body recover.

Macmillan Cancer Support have more information on finishing cancer treatment.

Getting support

Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk to your family and friends, or your doctor or nurse.

Organisations like Sarcoma UK can provide information and support.

Cancer52 works to improve the quality of life for people with rare cancers.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the Macmillan soft tissue sarcoma forum – you can talk to others affected by Kaposi’s sarcoma, ask questions and share your experience

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