Kaposi's sarcoma?

Dear Anxious,

Though new and atypical symptoms may make your mind wonder to a host of various causes, it’s best to not jump to conclusions just yet. Kaposi's sarcoma, or KS, is a rare form of cancer in which tumors develop on the skin, lungs, gastrointestinal tract, or other organs. It takes advantage of those with weakened immune systems (such as those of people with HIV) and is usually not harmful to healthy people. Since you haven’t mentioned that you have a compromised immune system and that you practice safer sex, it seems unlikely that your unexplained spots are caused by KS. And, though it may seem contrary to what you think about HIV testing, knowing your status and how it may or may not relate to your symptoms may actually bring some peace of mind. A visit with a health care provider is really the only way to know for sure.

Since your question suggests the interaction between the HIV virus and KS, it’s good to make a clear distinction. For people with acquired immunodeficiency syndrome (AIDS), KS is caused by the interaction between human herpesvirus-8 (HHV8) — also known as Kaposi's sarcoma-associated herpesvirus (KSHV), HIV, and a compromised immune system. People who are HIV positive that are diagnosed with Kaposi's sarcoma are considered to have developed AIDS.

KS initially causes purple, brown, or black lesions (spots) on the skin, linings (mucus membranes) of the mouth or nose or throat, lymph nodes, or other organs that do not heal. Lesions can occur anywhere on the body, but they may appear initially on the feet or ankles, thighs, arms, hands, or face. While lesions themselves are usually painless, they can lead to pain in nearby healthy tissues and they can sometimes bleed. Other symptoms of KS can include:

• Swelling in legs and feet if lesions block the flow of fluid out of the legs or when lymph nodes in the legs are infected
• Abdominal pain and diarrhea if lesions are on stomach or intestines
• Black or bloody stools (although an absence of blood in the bowel movements does not rule out having KS — sometimes the lesions may cause a slow bleeding that can result in anemia, tiredness, and shortness of breath without visible blood in the stool)
• Persistent cough or difficulty breathing if lesions spread to the respiratory system and block an airway
• Coughing up blood if lesions on lungs bleed

While KS symptoms are frequently associated with AIDS, they can be signs of other health issues. For example, those who have had certain organ transplants (like the kidney) are more at risk of developing KS.

If you’re concerned you have HIV/AIDS, or KS, consider getting tested as it is the only way to know for sure. Similarly, AIDS must be diagnosed by a health care provider depending on whether a patient meets a very specific set of criteria. While testing itself can definitely be stressful for some people, you also seem to be anxious about your symptoms and their cause. Many HIV testing sites offer results in 24 hours or less and provide counselors who can talk with you about your testing anxiety and any other concerns you have about HIV/AIDS. For more information on HIV/AIDS, check out the Go Ask Alice! HIV/AIDS archives.