Kaposi sarcoma: what it looks like and what to do next
Kaposi sarcoma (KS) often shows up as purple, brown, or red patches or bumps on the skin. But it can also affect the mouth, lungs, and gut. If you notice new, painless spots or unexplained swelling, it’s worth getting checked — early answers make treatment simpler.
What causes Kaposi sarcoma?
KS is caused by human herpesvirus 8 (HHV‑8). Not everyone infected with HHV‑8 gets KS. The disease is more likely when the immune system is weak — most commonly with untreated HIV infection, organ transplant patients on strong immune-suppressing drugs, or in certain regions of Africa where the virus is common.
There are four main types of Kaposi sarcoma: classic (slow, mostly older men), epidemic (linked to HIV), endemic (seen in parts of Africa), and iatrogenic (related to immune-suppressing medicines after organ transplant). Which type you have affects your treatment plan.
How doctors find out if it’s KS
Diagnosis starts with a physical exam. The only way to be sure is a skin or tissue biopsy — a small sample looked at under a microscope. If doctors suspect internal disease, they’ll order scans (CT, endoscopy) or tests like a chest X-ray. For people with suspected HIV-associated KS, expect blood tests including an HIV test and CD4 count.
Treatment depends on where the disease is and how much it’s affecting your life. If KS is limited to a few skin spots, local treatments often work well: surgical removal, cryotherapy (freezing), laser, or radiation for painful or bleeding spots. Topical medicines and injections straight into lesions (intralesional chemo) are options too.
When KS is widespread, causing breathing or gut problems, or growing quickly, systemic therapy is needed. The most commonly used drugs are liposomal doxorubicin and paclitaxel. For people with HIV, starting or optimizing antiretroviral therapy (ART) is the first and most important step — controlling HIV often shrinks lesions on its own. Some patients may also get interferon or other targeted approaches; clinical trials are available for new options.
What about outlook? If the immune system is controlled, many people do well. Untreated or advanced internal disease can be harder to manage. Side effects from treatments vary, so ask about risks and what to expect.
When should you see a doctor right away? If you notice new skin lesions that grow, oral sores that make eating hard, new shortness of breath, coughing blood, black stools, or sudden swelling in an arm or leg. Useful questions to ask your clinician: Do I need a biopsy? Should I be tested for HIV? What treatment fits my situation and what are the side effects? Are there clinical trials I can join?
Controlling HIV, avoiding unnecessary immune suppression, and regular follow-up are the best ways to prevent KS from getting worse. If you’re worried about a spot or new symptoms, don’t wait — a quick check can save a lot of trouble later.
