Frequently Asked Questions About AIDS-Related Kaposi’s Sarcoma

Here are some frequently asked questions about AIDS-related Kaposi sarcoma.

Q: What is Kaposi sarcoma?

A: A sarcoma is a cancer that can grow in any of these body tissues:

  • Blood vessels

  • Bones

  • Cartilage

  • Fat

  • Muscles

Kaposi sarcoma (KS) is named for Moritz Kaposi, the doctor who first described it. In KS, cancer cells grow in the lining of the blood or lymph vessels below the skin or in the mucous membranes of the nose, mouth, lung, or anus. KS causes purple, brown, or red patches on the skin called lesions. These lesions can spread to other organs in the body.

Even though these lesions can be deforming, they are not usually life-threatening. However, KS can cause serious problems (or even become life-threatening) when the lesions are in the lungs, liver, or digestive tract. 

Q: Are there different kinds of KS?

A: There are several main types of KS:

  • AIDS-related (also called epidemic) KS

  • Classic KS

  • African (endemic) KS

  • Transplant-associated KS

This site covers AIDS-related Kaposi sarcoma.

Some people who are infected with human immunodeficiency virus (HIV) get acquired immunodeficiency syndrome (AIDS)-related KS. The HIV virus kills CD4 cells (also known as T cells) of the immune system. This makes the body less able to fight off infections caused by other viruses, bacteria, and parasites.

Q: Who is at risk for AIDS-related KS?

A: The main risk factor for getting KS is being HIV positive or having AIDS. Other risk factors for KS include being male and being a male who has sex with other men.

Q: Do only people with HIV and AIDS get KS?

A: People with HIV or AIDS are the only people who get AIDS-related KS.

Men older than 50 of Mediterranean or Eastern European Jewish heritage are the people who most often get classic KS. But classic KS is rare even in these groups.

People in Africa are most likely to get African (endemic) KS.

Transplant patients whose immune systems are suppressed are most likely to get transplant-related KS.

Men who have sex with men are also at risk for KS similar to classic KS, even if they do not have HIV. 

Q: What are the symptoms of KS?

A: Symptoms of KS can be hard to find at first. It may take a long time for you and your doctor to see them. If you are have risk factors for KS or if you already think you have KS, you should see your doctor.

These are some symptoms of KS:

  • Lesions that often start out as flat or slightly raised colored spots on the skin.

  • Lymphedema, which is swelling that blocks the lymph nodes or lymph vessels. Usually, the swelling occurs in the legs and feet.

  • Swelling of the lymph nodes

Q: If I have HIV or AIDS, will I definitely get KS?

A: Just because a person has HIV or AIDS does not mean he or she will get KS. However, a person with AIDS has a higher risk of developing KS.

Q: How do doctors diagnose KS?

A: Because KS lesions in the skin may look like other skin diseases, the doctor usually takes a sample of the lesion to look at under a microscope. This is called a biopsy.

Q: How do doctors stage KS?

A: The stage of a cancer tells how far it has spread and helps determine treatment. It can be hard to stage AIDS-related Kaposi's sarcoma (KS) because it comes from a disease that affects the whole immune system.

You may need additional tests after diagnosis to determine your stage.

Q: How do doctors treat KS?

A: These are the main treatments for Kaposi's sarcoma (KS):

  • Highly active antiretroviral therapy (HAART), which are medications used to treat HIV infection and that also, indirectly, decrease the size and number of KS lesions

  • Surgery to remove the lesions

  • Radiation therapy, which uses X-rays to kill cancer cells

  • Chemotherapy, which uses drugs to kill cancer cells

  • Immunotherapy, which uses drugs that build up the immune system and fight the cancer.

Q: Should everyone get a second opinion for a diagnosis of KS?

A: Many people with cancer get a second opinion from another doctor. There are many reasons to get one. Here are some of those reasons.

  • Not feeling good about the treatment decision

  • Being diagnosed with a rare type of cancer

  • Having several treatment options for the cancer

  • Not being able to see a cancer expert

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