Patient education: Kaposi sarcoma (The Basics)

What is Kaposi sarcoma? — Kaposi sarcoma is a type of cancer that mostly grows on the skin. Cancer happens when normal cells change into abnormal cells and grow out of control.

There are different kinds of Kaposi sarcoma. One type is called "classic" Kaposi sarcoma. It is very rare and happens mostly in older adults. It grows very slowly and does not always need to be treated.

Another type of Kaposi sarcoma, which is more common, happens in people who have HIV or AIDS. HIV is a virus that affects the body's infection-fighting system, also called the immune system. People with HIV can get sick easily, because their immune system can't fight off infections or cancer well. The most serious stage of HIV infection, when the immune system is very weak, is called AIDS. In people with HIV or AIDS, Kaposi sarcoma usually grows quickly and needs to be treated.

Kaposi sarcoma can also happen in people who have had organ transplant surgery. Transplant surgery is when a doctor replaces a diseased organ (such as the kidney, heart, or liver) with a healthy organ.

What are the symptoms of Kaposi sarcoma? — When it first develops, Kaposi sarcoma looks like a red, pink, purple, blue, or brown area of skin (picture 1). It usually starts out flat, but can become raised or bumpy. Kaposi sarcoma often happens on the legs or feet, but can grow on the nose or genitals, or in the mouth of people with HIV or AIDS (picture 2). Sometimes, Kaposi sarcoma causes swelling of the legs (or other affected body part).

In people with HIV or AIDS, Kaposi sarcoma can also grow inside the body, such as in the digestive tract or lungs.

Kaposi sarcoma in the digestive tract can cause:

●Weight loss

●Belly pain

●Nausea, vomiting, or diarrhea

●Blood in bowel movements

Kaposi sarcoma in the lungs and airways can cause:

●Trouble breathing

●Chest pain

●Cough or coughing up blood

Is there a test for Kaposi sarcoma? — Yes. Your doctor or nurse will do an exam and order a test called a biopsy. For a biopsy, they take a small sample of the abnormal area. Then, another doctor looks at the sample under a microscope.

You might have other tests to check for Kaposi sarcoma in other parts of your body. This will depend on your symptoms and individual situation.

What is cancer staging? — In general, cancer staging is a way in which doctors find out how far a cancer has spread in the body.

Staging for Kaposi sarcoma is not always needed. It is sometimes done for people with HIV or AIDS. Staging involves finding out how far the cancer has spread in the body. It also involves finding out how well a person's immune system is working and how healthy they are.

How is Kaposi sarcoma treated? — Treatment depends on the type of Kaposi sarcoma, how big the growths are, and where they are.

People with slow-growing classic Kaposi sarcoma might not need treatment right away. But their doctor will monitor their condition closely to watch for changes.

People with Kaposi sarcoma and HIV or AIDS are treated for their HIV infection. This involves taking "antiretroviral" medicines. These medicines help keep the HIV virus in the body under control so that the immune system can work better and also fight the cancer.

Other treatments for Kaposi sarcoma can include:

●Surgery to remove the cancer

●Radiation therapy – Radiation can kill cancer cells.

●Chemotherapy – Chemotherapy is the medical term for medicines that kill cancer cells or stop them from growing. Sometimes, people get chemotherapy directly into their cancer. Other times, people get chemotherapy through a thin tube that goes into a vein, called an "IV."

●A medicine called pomalidomide – This is taken as a pill.

●Medicines that go directly on the parts of the skin affected by the cancer

●Special socks called "compression stockings" that fit tightly over the leg – These can help reduce leg swelling.

What else should I do? — Follow all of your doctor's instructions about visits and tests. It's also important to talk to your doctor about any side effects or problems you have during treatment.

Getting treated for Kaposi sarcoma can involve making many choices, such as what treatment to have. Always let your doctors and nurses know how you feel about a treatment. Anytime you are offered a treatment, ask:

●What are the benefits of this treatment? Is it likely to help me live longer? Will it reduce or prevent symptoms?

●What are the downsides to this treatment?

●Are there other options besides this treatment?

●What happens if I do not have this treatment?

More on this topic

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Patient education: When your cancer treatment makes you tired (The Basics)
Patient education: Managing loss of appetite and weight loss with cancer (The Basics)
Patient education: Nausea and vomiting with cancer treatment (The Basics)
Patient education: Hair loss from cancer treatment (The Basics)
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Patient education: Initial treatment of HIV (Beyond the Basics)
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