What is Kaposi sarcoma?

Kaposi sarcoma is a type of cancer that develops in the lining of your blood and lymph vessels. It may appear as reddish patches that are visible on the skin.

Unlike some cancers that start in one place and spread to other parts of the body, Kaposi sarcoma can start in multiple places at the same time.

What are the types of Kaposi sarcoma?

There are 4 different types of Kaposi sarcoma:

• AIDS-related Kaposi sarcoma, also known as HIV-associated Kaposi sarcoma or epidemic Kaposi sarcoma, affects people living with HIV and AIDS and is the most common type of Kaposi sarcoma.
• Classic (Mediterranean) Kaposi sarcoma usually affects older males of Mediterranean or Middle Eastern origin. It usually grows slowly and often affects the legs, ankles and feet.
• Iatrogenic Kaposi sarcoma affects people who take medicines that weaken their immune system, such those used as after an organ transplant.
• Endemic (African) Kaposi sarcoma generally affects people who live in countries near the equator in Africa, especially children and young adults.

What are the symptoms of Kaposi sarcoma?

The main symptoms of Kaposi sarcoma are lesions on the skin. These lesions may:

• be purple, red or brown
• look like bruises
• be flat, raised or bumpy
• sometimes bleed
• increase in size over time

They may affect only one area of the body or appear in several areas at the same time. They usually affect the legs or face, but may also grow inside the body.

If lesions grow inside the body, they can cause different symptoms depending on the organs affected. Symptoms may include:

• nausea, abdominal pain or diarrhoea (if in the stomach or bowel)
• breathlessness and a cough (if in the lungs)
• swollen glands, or swollen arms and legs (if in the lymph nodes)
• fatigue

These symptoms are common in other conditions as well. If you are worried, ask your doctor.

What causes Kaposi sarcoma?

Kaposi sarcoma is caused by the human herpes virus-8 (HHV-8), and is also known as the Kaposi sarcoma herpesvirus.

Not everyone with HHV-8 will develop Kaposi sarcoma. It is more likely to affect people who have a weakened immune system as well as having HHV-8.

When should I see my doctor?

If you have HIV, have had an organ transplant or come from a region where HHV-8 is common, see your doctor straight away if you notice any skin lesions, even small ones. Always follow your doctor's advice and have regular check-ups, especially if you have HIV or a weak immune system.

How is Kaposi sarcoma diagnosed?

If your doctor thinks you may have Kaposi sarcoma, they will examine you and check your skin and lymph nodes. They may also refer you for an HIV and HHV-8 test, if your HIV and HHV-8 statuses are unknown.

The only way to confirm Kaposi sarcoma is with a biopsy. This involves taking a small sample of the lesion for examination in a laboratory.

Tests to check for other lesions may include:

• imaging scans — such as x-ray, computed tomography (CT) or magnetic resonance imaging (MRI) to check if the cancer has spread anywhere else in the body
• procedures — such as endoscopy (to check your stomach) or bronchoscopy (to check your lungs)

How is Kaposi sarcoma treated?

Treatment for Kaposi sarcoma commonly includes chemotherapy. Your specific treatment plan will depend on factors such as:

• the type of Kaposi sarcoma you have
• how many lesions you have and where they are
• your general health
• how well your immune system is working

Treatment may include a combination of:

• chemotherapy
• immunotherapy
• radiotherapy
• cryotherapy (freezing lesions)
• laser therapy
• surgery

If you have AIDS, antiretroviral therapy can help reduce lesions by gradually lowering the amount of HIV (viral load) in your body. This will help your immune system function better.

Living with Kaposi sarcoma

Living with Kaposi sarcoma can be challenging, but many people manage it well with the right care and support. Treatment, including antiretroviral therapy for people with HIV, can help improve immune function and reduce lesions. Regular doctor visits are important to check for new or returning lesions.

Emotional and physical wellbeing are both important. Some things that can help you cope include:

• support groups
• counselling
• healthy lifestyle habits, such as eating well and staying active
• following your treatment plan

What are the complications of Kaposi sarcoma?

Kaposi sarcoma can lead to different complications depending on the part of the body affected.

Possible complications include:

• large, painful lesions
• swelling and changes in the appearance of your skin
• difficulty breathing if your lungs are affected, which can be life-threatening

Can Kaposi sarcoma be prevented?

There is no known way to prevent the virus (HHV-8) that causes Kaposi sarcoma. You can reduce your risk by reducing your chance of catching HIV. This means always practising safe sex and never sharing needles to inject drugs.

For people living with HIV, taking antiretroviral medicines helps reduce the amount of HIV (viral load) in your body. This may lower your chance of developing Kaposi sarcoma.

Resources and support

• The National Association of People with HIV Australia (NAPWHA) has a range of resources about HIV.
• Cancer Council Australia provides services and support to all people affected by cancer. Call 13 11 20.
• Rare Cancers Australia provides support for people living with rare cancers.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.

Information for Aboriginal and/or Torres Strait Islander people

Find an Aboriginal Community Controlled Health Organisation (ACCHO) or Affiliate near you.

Health Equity Matters has a hub of information for Aboriginal and/or Torres Strait Islander people.

Cancer Australia has support and resources for Aboriginal and/or Torres Strait Islander people s with cancer, their families and communities.

Our Mob and Cancer has information on cancer treatments and living with cancer.

The National Association of People with HIV Australia (NAPWHA) has resources for Aboriginal and/or Torres Strait Islander people.

NAPWHA also has a national membership-based group, called Positive Aboriginal and Torres Strait Islander Network (PATSIN), for Aboriginal and/or Torres Strait Islander people living with HIV.

The Poche Centre for Indigenous Health has resources on HIV for Aboriginal and/or Torres Strait Islander people.

Information for sexually and gender-diverse families

Health Equity Matters provides information about HIV and AIDS for HIV and LGBTIQ+ communities.

QLife has free LGBTIQ+ peer support and referral, so you can talk about sexuality, gender, bodies, health or relationships.

Languages other than English

Health Equity Matters has a range of resources about HIV and AIDS in many community languages.

The Cancer Council has booklets, fact sheets and videos in many community languages.