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Kaposi's Sarcoma

What is Kaposi sarcoma?

Kaposi sarcoma, also called KS, is a type of skin cancer. This cancer is most common in people who have the human immunodeficiency virus (HIV) or acquired immunodeficiency disease (AIDS). People who have had an organ transplant may also get KS. You can get KS without having had an organ transplant, HIV, or AIDS. KS may appear on any part of your skin. It can also be found in your lymph nodes, stomach, intestines, liver, spleen, lungs, and bones. This disease may remain in one area on your skin and need very little treatment, or it may spread to other areas or organs. KS may spread quickly through your body or may stay unchanged for a long time.

What causes or increases my risk of getting Kaposi sarcoma?

The cause of KS is not known. Most people who get KS have a weak immune system. The immune system fights infection in the body. The following may increase your risk of getting KS:

  • Having human herpes virus-8: KS may be caused by a virus (germ) called human herpes virus-8 (HHV-8). People may get this virus when they share body fluids, such as during sexual intercourse or deep kissing. This includes sharing such fluids as blood, saliva (spit), or sperm.

  • Having HIV or AIDS: Having HIV or AIDS makes it hard to fight off illness and disease.

  • Having had an organ transplant: An organ transplant is when an organ, such as the kidney, is removed and replaced with the same organ from another person. If you have an organ transplant, you will often need to take medicine that weakens your immune system.

  • Certain medicines: Using such medicines as steroids or some types of medicine used to treat cancer can weaken the immune system. This may increase your risk of getting KS.

What are the signs and symptoms of Kaposi sarcoma?

The main sign of the disease is lesions. Lesions are spots, sores, or bumps that can grow on your skin and in your body. Lesions can grow on your legs, feet, arms, hands, face, stomach, back, or groin. They may be blue, red, purple, or brown in color. Lesions may also grow in your mouth. The lesions may spread to other places in your body, including your intestines, lungs, stomach, liver, spleen, or bones. The lesions can be painful or itchy, and they may bleed or leak fluid. Lesions may cause other signs and symptoms, depending on where they are in the body:

  • Swelling in areas where you have lesions on your skin. These areas may feel tight and painful. Your arms or legs may feel heavy or hard to move. You may have trouble walking or driving, or your clothing, socks, or shoes may be too tight because of the swelling. Your lymph nodes may also be large and swollen. Lymph nodes are clusters of tissue found throughout your body and are part of your immune system.

  • Coughing or trouble breathing. You may also cough up blood.

  • Diarrhea (loose, watery stools, more often than usual). You may also have blood in your stool.

  • Nausea (feeling sick), vomiting (throwing up), or a swollen stomach. You may not feel hungry or want to eat.

  • Headaches or bone pain.

  • Trouble urinating. You may not know when you need to urinate, and you may begin to urinate without warning.

  • Fevers, sweating, fatigue (tiredness), or weakness.

How is Kaposi sarcoma diagnosed?

Your caregiver will check your body for lesions, including inside your mouth and anus. He will check the size, color, and shape of your lesions. Tests can show if you have KS lesions in certain body areas, or if the lesions have spread to other body areas. Depending on your signs and symptoms, you may need blood tests and one or more of the following:

  • Biopsy: A biopsy is when caregivers take cells out of your body through a needle. The biopsy may be taken from a lesion on the skin, or a sample may be taken from a bone or lymph node. A lymph node may need to be removed. The biopsy sample is sent to a lab and tested for KS.

  • Chest x-ray: A chest x-ray is a picture taken of the lungs and heart.

  • Computed tomography scan: This test is also called a CT scan. During this test, a special x-ray machine uses a computer to take pictures of your chest or other body areas. You may be given dye through an intravenous (IV) tube that is placed in your vein. The dye helps body areas show up better in the pictures. People who are allergic to shellfish (lobster, crab, or shrimp) may be allergic to dye. Tell your caregiver if you are allergic to shellfish or dye.

  • Endoscopy or bronchoscopy: An endoscopy is done so that caregivers can look inside your stomach and intestines. A bronchoscopy is done so that caregivers can look inside your airways and lungs. A scope (a long, bendable tube with a light on the end of it) is used for these tests. For an endoscopy, the scope is put in through the mouth and moved down your esophagus to your stomach and intestines (bowels). During a bronchoscopy, the scope is moved down your airways and into your lungs. During an endoscopy or bronchoscopy, samples of tissue may be collected from your airways, lungs, stomach, or intestines. These samples are sent to a lab for tests.

  • Magnetic resonance imaging: This test is also called an MRI. During this test, pictures are taken of your abdomen, bones, and other body areas. You will need to lie still during an MRI. Never enter the MRI room with any metal objects because this can cause serious injury. Tell your caregiver if you have any metal in or on your body.

  • Ultrasound: An ultrasound uses sound waves to take pictures of your organs and tissues. The pictures are seen on a TV-like screen.

How is Kaposi sarcoma treated?

Your treatment depends on where you have lesions and on your signs and symptoms. Treatment can make your lesions and swelling decrease or go away. Your symptoms may go away for weeks, months, or even longer. You may need any of the following treatments:

  • Medicine:

    • Chemotherapy: Chemotherapy works to stop cancer cells from growing and kills new cancer cells. Chemotherapy may be injected (given as a shot) into skin lesions. It may be given through an IV to treat KS in other body areas.

    • Topical chemotherapy: Chemotherapy is often called "chemo". The word topical means it is put on the skin as a lotion or cream. This medicine is used to treat cancer that is in the outer layers of the skin. Topical chemotherapy is put on to kill cancer cells. While being treated, your skin may hurt and look very red.

    • Interferon: Interferon is used to strengthen the immune system. It may also help stop HHV-8 from growing.

    • Highly active antiretroviral therapy: If you have HIV or AIDS and KS, your treatment may include highly active antiretroviral therapy (HAART). This therapy uses three or more medicines that work together to stop HIV from growing. If HIV stops growing, then HHV-8 may also stop growing. HAART is usually given with chemotherapy.

  • Treatments and surgery:

    • Radiation therapy: During radiation therapy, x-rays or gamma rays are used on KS lesions to decrease their size. This therapy may also decrease pain in the area of your lesions.

    • Cryotherapy: Cryotherapy treatments freeze and remove lesions on the skin. If you need cryotherapy, ask caregivers for more information about it.

    • Surgery: Your skin lesions may be removed with surgery. If KS is in your bones or other body areas or organs, you may need other kinds of surgery. Ask your caregiver for more information if you need surgery.

What can I do to cope with Kaposi sarcoma?

  • Practice good mouth care: Brush your teeth twice daily. Floss your teeth regularly, and use mouthwash. This may decrease problems that can come with KS, including having mouth pain and dryness and trouble eating and swallowing. Keep your teeth and mouth clean. This may help you enjoy eating more, so you can get enough of the nutrients (vitamins and minerals) that you need.

  • Eat a healthy diet: Eat a balanced diet, including protein and fiber. Ask your caregiver if you should make changes to what you eat, or if you should follow a special diet. If you have dry mouth, drinking liquids while you eat may help make it easier to chew and swallow.

  • Wear support stockings and elevate your legs: If you have swelling in your legs or feet, your caregiver may tell you to wear support stockings. These are also called compression garments. The stockings put pressure on your feet and legs and may decrease swelling and pain. Support stockings are often worn during the day and are removed at night. Ask caregivers how to take care of your skin while wearing support stockings. Raising your legs up on pillows while sitting or lying down may also decrease swelling. Ask your caregiver about other treatments that may be done to decrease swelling.

  • Get enough exercise: Physical therapy treatments can help you walk if you are having trouble moving around. A special caregiver called a physical therapist can show you exercises to help you move more easily and with less pain. You may be fitted with special shoes or shoe inserts. Ask caregivers to help you plan an exercise program to follow at home.

  • Prevent spreading human herpes virus-8: Use a condom during sexual intercourse. This may prevent spreading HHV-8 to your partner. Deep kissing may spread HHV-8 through your saliva. Spreading this virus to someone who has a weak immune system may increase that person's risk of getting KS. Do not use street (illegal) drugs. Do not use drugs that are injected into your vein. Do not use a dirty needle or share needles with anyone or at any time.

What are the risks of treating Kaposi sarcoma?

  • Chemotherapy can weaken your immune system and make it harder for you to fight new infections. The number of red blood cells in your body may decrease, making you feel tired or weak. Chemotherapy can cause mouth sores, vomiting, or hair loss or can make you bruise easily. Some chemotherapy may cause nerve, heart, or lung problems. This therapy can also cause constipation (dry, hard stools that are difficult to pass). Chemotherapy may cause redness, itching, peeling, numbness, or tingling of your hands and feet. Chemotherapy medicine that is given as a shot or put on skin lesions as a cream or gel may cause pain.

  • Interferon may cause problems in your liver; weaken your immune system; or make you feel tired, weak, or very sad. HAART medicine may cause other medicines to stop working as well. Radiation may cause mouth sores, redness, pain, or changes in the color of your skin. Cryotherapy may cause blisters or pain. Even with treatment, your lesions may get smaller for only a short period of time. Your lesions may not go away, or they may increase in size or number.

  • If you do not get treatment for KS, your lesions may spread. Symptoms, such as pain or swelling, may get worse. KS may spread to other organs in your body, such as your lungs, and you may die. Talk to your caregiver if you have questions or concerns about KS or its treatment.

Where can I find more information?

If you have HIV or AIDS, ask your caregiver for more information about coping with this disease. For more information about KS, contact the following:

  • American Cancer Society
    250 Williams Street
    Atlanta , GA 30303
    Phone: 1- 800 - 227-2345
    Web Address: http://www.cancer.org

When should I call my caregiver?

Call your caregiver if:

  • You have a fever.

  • You feel more tired or weak or have new signs or symptoms after starting a medicine or treatment.

  • Your hands and feet are itchy, swollen, or painful, or they tingle or are numb (lose feeling).

  • The lesions on your skin are more painful or itchy, they are changing color or bleeding, or you are getting new or more lesions.

  • Your legs are swollen and painful, and you are having problems walking.

When should I seek immediate help?

Seek care immediately or call 911 if:

  • You are coughing or having trouble breathing, or you are coughing up blood.

  • You are having more trouble eating or swallowing, or you are nauseated (feeling sick) or vomiting (throwing up).

  • You keep having diarrhea or constipation, or there is blood in your stool.

  • You have headaches or bone pain, or you suddenly lose control over when you urinate.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

© 2013 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

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