Frequently Asked Questions About AIDS-Related Kaposi's Sarcoma

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

Q: What is Kaposi's sarcoma?

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

  • Blood vessels

  • Bones

  • Cartilage

  • Fat

  • Muscles

  • Stringy tissues such as tendon

Kaposi's 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.

Q: Are there different kinds of Kaposi's sarcoma?

A: There are several main types of Kaposi's sarcoma (KS).

  • AIDS-related (also called epidemic) KS

  • Classic KS

  • African (endemic) KS

  • Immunosuppressive treatment-related KS

This site covers AIDS-related Kaposi's sarcoma.

Some people who are infected with human immunodeficiency virus (HIV) get acquired immunodeficiency syndrome (AIDS)-related Kaposi's sarcoma. The HIV virus kills CD4 cells (also known as T cells) of the immune system. This makes the body unable to fight off infections caused by other viruses, bacteria, and parasites.

Q: Who is at risk for AIDS-related Kaposi's sarcoma?

A: The main risk factor for getting Kaposi's sarcoma (KS) is being HIV positive or having AIDS. Other risk factors for KS include being male or being gay or bisexual.

Gay and bisexual men who are HIV positive are the people most likely to get KS.

Q: Do only people with HIV and AIDS get Kaposi's sarcoma?

A: People with HIV or AIDS are the only people who get AIDS-related Kaposi's sarcoma (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.

Q: What are the symptoms of Kaposi's sarcoma?

A: Symptoms of Kaposi's sarcoma (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 exposed to risk factors or if you 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 is in the legs and feet.

  • Swelling of the lymph nodes

Q: If I have HIV or AIDS, will I definitely get Kaposi's sarcoma?

A: Just because a person has HIV or AIDS does not mean he or she will get Kaposi's sarcoma (KS). However, a person with AIDS has a higher risk of getting KS.

Q: How do doctors diagnose Kaposi's sarcoma?

A: Because Kaposi's sarcoma (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 Kaposi's sarcoma?

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 more tests after diagnosis to determine your stage.

Q: How do doctors treat Kaposi's sarcoma?

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

  • Highly active antiretroviral therapy (HAART), which uses drugs to treat HIV infection and decreases 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

Many people have a hard time deciding which Kaposi's sarcoma (KS) treatment to have. It may help to have a second doctor review the diagnosis and treatment options 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.

Q: How can someone get a second opinion?

A: 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 doctor. He or she may be able to suggest a specialist. This may be a surgeon, medical oncologist, or radiation oncologist. Sometimes these doctors 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.

  • Consult The Official ABMS Directory of Board Certified Medical Specialists. This book lists doctors by state. It gives their specialty, background, and training. It is available at most public libraries. You can also view it by registering online at www.abms.org.

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

Q: What is new in Kaposi's sarcoma research?

A: Doctors are always looking for new ways to treat and cure Kaposi's sarcoma (KS). For AIDS-related KS, great strides are being made every day to control HIV infection.

Doctors are trying angiogenesis inhibitor drugs to block the growth of new blood vessels in a tumor. These are some angiogenesis inhibitors now being studied.

  • Interleukin-12

  • Metastat (COL-3)

  • Thalomid (thalidomide)

Studies have also looked at drugs that attack herpesviruses such as HHV-8, including Cytovene (ganciclovir) and Foscavir (foscarnet). While these drugs may help prevent new KS lesions from forming, they don't seem to have much effect on lesions that have already developed.

Q: What are clinical trials?

A: Clinical trials study new cancer treatments. Doctors 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 get to use treatments before the U.S. Food and Drug Administration (FDA) approves them for general use. People who join trials help researchers learn more about cancer and help future cancer patients.


Connect With MLH

Copyright 2014 Main Line Health

Printed from: www.mainlinehealth.org/stw/Page.asp?PageID=STW017122

The information provided in this Web site is for informational purposes only. It is not a substitute for medical advice. All medical information presented should be discussed with your healthcare professional. See additional Terms of Use at www.mainlinehealth.org/terms. For more information, call 1.866.CALL.MLH.