AIDS-Related Kaposi Sarcoma: Frequently Asked Questions

AIDS-Related Kaposi Sarcoma: Frequently Asked Questions

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

What is Kaposi sarcoma?

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

  • Blood or lymph vessels

  • Bones

  • Cartilage

  • Fat

  • Muscles

  • Other soft tissues

Kaposi sarcoma is named for Moritz Kaposi, the healthcare provider 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, or anus. Less often, it can grow in other parts of the body, such as in the lymph nodes, lungs, or in the lining of the digestive tract. KS causes purple, brown, or red patches on the skin called lesions. These lesions can be flat or raised, and are usually not painful.

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. 

Are there different kinds of KS?

There are several main types of KS:

  • AIDS-related (also called epidemic) KS

  • Classic KS

  • African KS

  • Transplant-associated KS

This article covers AIDS-related Kaposi sarcoma.

Some people who are infected with HIV get 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. KS is linked to infection with a different virus called HHV-8 (or KSHV). It is thought that having a weakened immune system allows this virus to grow, which can lead to KS. 

Who is at risk for AIDS-related KS?

The main risk factor for getting KS in the United States is being HIV positive or having AIDS. Other risk factors for KS include having a weakened immune system for some other reason, being male, and being a male who has sex with other men. 

Do only people with HIV and AIDS get KS?

People with HIV or AIDS are the only people who get AIDS-related KS, but other people can get other forms of KS. 

Men of Mediterranean, Middle Eastern, 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 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. 

What are the symptoms of KS?

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

These are some symptoms of KS:

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

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

  • Swelling of the lymph nodes

  • Shortness of breath, chest pain, or cough (which might be bloody) if lesions are in the lungs

  • Belly pain or diarrhea if lesions are in the digestive tract 

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

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

How do healthcare providers diagnose KS?

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

How do healthcare providers stage KS?

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. The stage is based on the extent of the tumor in the body, the status of your immune system, and whether or not you have other illnesses. 

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

How do healthcare providers treat KS?

These are the main treatments for KS:

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

  • Surgery or other local treatments. These are done to remove or destroy the lesions.

  • Radiation therapy. Treatment that uses X-rays to kill cancer cells.

  • Chemotherapy. Treatment that uses medicines to kill cancer cells

  • Immunotherapy. Treatment that uses medicines that build up the immune system and fight the cancer.

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

Many people with cancer get a second opinion from another healthcare provider. 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 choices for the cancer

  • Not being able to see a cancer expert

Many people have a hard time deciding which KS treatment to have. It may help to have a second healthcare provider review the diagnosis and treatment choices before starting treatment. In most cases, a short delay in treatment will not lower the chance that it will work. Some health insurance companies even require that a person with cancer seek a second opinion. Many other companies will pay for a second opinion if asked. Never be afraid to ask for a second opinion.

How can someone get a second opinion?

There are many ways to get a second opinion:

  • Call an AIDS service organization. These organizations often keep lists of local AIDS experts and AIDS-cancer experts.

  • Ask a primary care healthcare provider. He or she may be able to suggest a specialist. This may be a surgeon, medical oncologist, or radiation oncologist. Often these healthcare providers work together at cancer centers or hospitals.

  • Call the National Cancer Institute's Cancer Information Service. The number is 800-4CANCER (800-422-6237). They have information about treatment facilities. These include cancer centers and other programs supported by the National Cancer Institute.

  • Seek other choices. Check with a local medical society, a nearby hospital or medical school, or support group to get names of healthcare providers who can give you a second opinion. Or ask people who've had cancer for their recommendations.

What is new in KS research?

Healthcare providers are always looking for new ways to treat and cure KS. For AIDS-related KS, great strides are being made every day to control HIV infection.

Healthcare providers are trying angiogenesis inhibitor medicines to block the growth of new blood vessels that help tumors to grow. Research on immunotherapy medicines to boost the immune system, such as interleukin-12 (IL-12), is also being done.

Studies have also looked at medicines that attack herpes viruses, such as HHV-8, including ganciclovir and foscarnet. Infection with HHV-8 is linked to KS. While these medicines may help prevent new KS lesions from forming, they don't seem to have much effect on lesions that have already developed.

What are clinical trials?

Clinical trials study new cancer treatments. Healthcare providers use clinical trials to learn how well new treatments work and what their side effects are. Promising treatments work better or have fewer side effects than the current treatments. People who participate in these studies sometimes get to use treatments before the FDA approves them for general use. People who join trials help researchers learn more about cancer and help future cancer patients.

Online Medical Reviewer: Alteri, Rick, MD

Online Medical Reviewer: Levin, Mark, MD

Date Last Reviewed: 10/1/2016

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