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Sarcoma - Kaposi - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Kaposi Sarcoma. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Cancer begins when normal cells change and grow uncontrollably, forming a mass called a tumor. A tumor can be benign (noncancerous) or malignant (cancerous, meaning it can spread to other parts of the body).

Kaposi sarcoma is a type of soft-tissue sarcoma. Soft-tissue sarcomas are a group of cancers that begin in the tissues that support and connect the body. Kaposi sarcoma generally develops in tissue below the skin's surface or in the mucous membranes of the mouth, nose, or anus. Kaposi sarcoma lesions (areas of abnormal tissue change) usually appear on the skin as raised blotches or nodules that may be purple, red, or brown. When viewed under a microscope, Kaposi sarcoma cells resemble blood vessels.

There are several types of Kaposi sarcoma:

Classic Kaposi sarcoma. Classic Kaposi sarcoma traditionally occurs in older men of Jewish or Mediterranean descent. Lesions most often appear on the lower body, particularly the legs, ankles, or soles of the feet. Classic Kaposi sarcoma is more common in men than women, and lesions may develop over a period of 10 to 15 years.

Endemic Kaposi sarcoma. Endemic (or African) Kaposi sarcoma usually develops in people living in equatorial Africa. Most often endemic Kaposi sarcoma is the same as classic Kaposi sarcoma, but people usually develop the disease at a younger age. A particularly aggressive form can develop in children who have not yet reached puberty, usually involving the lymph nodes and other organs. Endemic Kaposi sarcoma usually causes skin lesions without any other symptoms, and these lesions do not spread to other parts of the body.

Acquired Kaposi sarcoma. Acquired (or immunosuppressive treatment-related or transplant-related) Kaposi sarcoma develops in people who have received an organ transplant and are taking drugs to suppress (lower) their immune system, so their body will not reject a transplanted organ. Because of treatment to lower the immune system, secondary diseases or infections can occur. Kaposi sarcoma is 150 to 200 times more likely to develop in people who have received an organ transplant than in the general population. Most of the time, acquired Kaposi sarcoma only affects the skin, but the disease can spread to the mucous membranes or other organs.

Epidemic Kaposi sarcoma. Kaposi sarcoma in people with HIV/AIDS is often called epidemic Kaposi sarcoma. Acquired immune deficiency syndrome (AIDS) is a disease of the immune system caused by infection with the human immunodeficiency virus (HIV). It is the most common type of Kaposi sarcoma. Today, Kaposi sarcoma is found most often in homosexual men with HIV/AIDS. Epidemic Kaposi sarcoma causes lesions to form in many different areas on the body. It may affect the lymph nodes and organs, such as the liver, spleen, lungs, and the digestive tract. Learn more about HIV/AIDS-related cancer.

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Sarcoma - Kaposi - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find information about how many people learn they have this type of cancer each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Kaposi sarcoma occurs in less than 1% of the general population. Before HIV/AIDS was widespread, Kaposi sarcoma was rare, with about two people diagnosed for every one million Americans. By the early 1990s, that rate had increased to about 47 cases per one million people, most of which were people with HIV/AIDS. This number has significantly decreased in recent years to about six cases per one million, because of more effective treatments for HIV/AIDS.

About one in 200 transplant recipients in the United States develops the disease.

The five-year survival rate is the percentage of people who survive at least five years after the cancer is detected, excluding those who die from other diseases. The five-year survival rate of people with Kaposi sarcoma is about 68% overall, but this can vary widely based on characteristics of the disease and other factors.  More effective treatments for HIV/AIDS are improving the survival rate both by treating the infections associated with HIV/AIDS and the Kaposi sarcoma.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of cancer, but the actual risk for a particular individual may differ. Because the survival statistics are measured in multi-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. It is not possible to tell a person how long he or she will live with Kaposi sarcoma. Learn more about understanding statistics.

Source: American Cancer Society.

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Sarcoma - Kaposi - Risk Factors and Prevention

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find out more about what factors increase the chance of developing this type of cancer. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors can raise a person’s risk of developing Kaposi sarcoma:

Ethnicity. People of Jewish or Mediterranean descent, as well as equatorial Africans, have a higher risk of developing Kaposi sarcoma.

Gender. Men have a higher risk of developing Kaposi sarcoma than women.

Human herpesvirus 8 (HHV-8). This virus may cause Kaposi sarcoma to develop. It is also called the Kaposi sarcoma herpesvirus (KSHV). Most people infected with HHV-8 do not get Kaposi sarcoma; the cancer appears most often when a person with HHV-8 also has a lowered immune system.

Immune deficiency. People with HIV/AIDS and people whose immune systems are suppressed following organ transplantation have a higher risk of developing Kaposi sarcoma.

Sexual activity. Homosexual men have a higher risk of infection with HHV-8, as well as HIV. Learn more about HIV/AIDS-related cancer.

Research continues to look into what factors cause this type of cancer and what people can do to lower their personal risk. While there is no proven way to completely prevent Kaposi sarcoma, a person can significantly reduce his or her risk by avoiding the known risk factors for HIV/AIDS infection, especially by avoiding risky sexual practices, such as having unprotected sex, and using intravenous (IV) needles that have been used by someone else. Talk with your doctor if you have concerns about your personal risk of developing this type of cancer.

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Sarcoma - Kaposi - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

People with Kaposi sarcoma may experience the following symptoms or signs. Sometimes, people with Kaposi sarcoma do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom or sign on this list, please talk with your doctor.

  • Lesions in the mouth and/or throat
  • Slightly elevated (like a bump) purple, pink, brown, or red blotches appearing anywhere on the skin
  • Lymphedema (swelling caused by a blockage of the lymph system)
  • Unexplained cough or chest pain
  • Unexplained stomach or intestinal pain
  • Diarrhea and/or blockage of the digestive tract, which can be caused by Kaposi sarcoma lesions that have developed in the gastrointestinal system

Your doctor will ask you questions about the symptoms you are experiencing to help find out the cause of the problem, called a diagnosis. This may include how long you’ve been experiencing the symptom(s) and how often.

If cancer is diagnosed, relieving symptoms and side effects remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose cancer and find out if it has metastasized (spread). Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has spread. This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of cancer suspected
  • Signs and symptoms
  • Previous test results

In addition to a physical examination, the following tests may be used to diagnose Kaposi sarcoma:

Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. The sample removed during the biopsy is analyzed by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease).

To determine if Kaposi sarcoma has spread to internal organs, the doctor may perform the following examinations:

X-ray. An x-ray is a way to create a picture of the structures inside of the body using a small amount of radiation.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a contrast medium (a special dye) is injected into a patient’s vein or given orally (by mouth) to provide better detail. CT scans of the chest and abdomen can help find cancer that has spread to the lungs, lymph nodes, or liver.

Endoscopy. This test allows the doctor to see inside the body with a thin, lighted, flexible tube called an endoscope. The person may be sedated as the tube is inserted through the mouth, down the esophagus, and into the stomach and small bowel.

Bronchoscopy. Similar to an endoscopy, the doctor passes a thin, flexible tube with a light on the end into the mouth or nose, down through the windpipe, and into the breathing passages of the lungs. This procedure may be performed by a surgeon or a pulmonologist (a medical doctor who specializes in lung problems). The tube lets the doctor see inside the lungs. Tiny tools inside the tube can gather samples of fluid and tissue and remove them so they can be examined by a pathologist. Patients are given mild anesthesia (medication to block the awareness of pain) during a bronchoscopy.

Photography. Because many skin lesions can develop in different parts of the body, doctors may regularly photograph parts of the skin (called mapping) to find out if new lesions have developed over time.

After these diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer; this is called staging.

The next section helps explain the different stages for this type of cancer. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis (chance of recovery). There are different stage descriptions for different types of cancer.

For epidemic Kaposi sarcoma, there is no official staging system; however, in 1988 the AIDS Clinical Trials Group (ACTG) developed a staging system called the TIS system. The ACTG is the largest HIV clinical trials organization in the world and is funded by the National Institutes of Health.

The TIS system evaluates:

  • The size of the tumor (Tumor, T)
  • The status of the immune system, which is measured by the number of a specific type of white blood cell, called a CD4 cell, in the blood (Immune System, I)
  • The spread of the disease or the presence of HIV/AIDS-related systemic illness (Systemic Illness, S)

Within each of the three parts of the system, there are two subgroups: good risk (0, zero) or poor risk (1, one).

The following table has been adapted from the original system, developed by the ACTG to illustrate the TIS system.

 

Good Risk (0)  

Poor Risk (1)  

 

(Any of the following)

(Any of the following)

Tumor (T)

Only located in the skin and/or lymph nodes and/or minimal oral disease (flat lesions confined to the palate or roof of the mouth)

Tumor-associated edema (fluid buildup) or ulceration (break in the surface of the skin) 

Extensive oral (mouth) Kaposi sarcoma

Gastrointestinal Kaposi sarcoma

Kaposi sarcoma in other organs in the body

Immune system (I)

CD4 cell count is 200 or more cells per cubic millimeter

CD4 cell count is less than 200 cells per cubic millimeter

Systemic illness (S)

No systemic (throughout the body) illness present

History of systemic illness and/or thrush

No “B” symptoms (Note: “B” symptoms are unexplained fever, night sweats, greater than 10% involuntary weight loss, or diarrhea persisting more than 2 weeks.)

One or more “B” symptoms are present

A Karnofsky performance status score of 70 or higher (see below)

A Karnofsky performance status of less than 70

Other HIV-related illness is present (for example, neurological disease or lymphoma)

The Karnofsky Performance Status scale measures the ability of people with cancer to perform ordinary tasks. People with a score of at least 70 can take care of themselves but are unable to carry on normal activity or active work.

100      Normal, no evidence of disease

90        Able to perform normal activity with only minor symptoms

80        Normal activity with effort, some symptoms

70        Able to care for self, but unable to do normal activities

60        Requires occasional assistance, cares for most needs

50        Requires considerable assistance

40        Disabled, requires special assistance

30        Severely disabled

20        Very sick, requires active supportive treatment

10        Moribund (dying; at the point of death)

0          Dead

Recurrent. Recurrent cancer is cancer that has come back after treatment. If there is a recurrence, the cancer may need to be staged again (called re-staging) using the system above.

Information about the cancer’s stage will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for this type of cancer. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu on the side of your screen.

This section outlines treatments that are the standard of care (the best proven treatments available) for this specific type of cancer. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Your doctor can help you review all treatment options. For more information, see the Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team.

Antiviral treatment

For patients with epidemic Kaposi sarcoma, highly active antiviral treatment (HAART) for HIV/AIDS is usually used before any other treatment options to treat the tumor and reduce the patient’s symptoms. HAART may be given alone or in combination with chemotherapy (see below), depending on the spread of the disease and the patient’s symptoms.

Rarely, HARRT can make the preexisting infections and the Kaposi sarcoma worse. This reaction is called "immune reconstitution inflammatory syndrome" (IRIS). If symptoms get worse in the initial weeks after starting HARRT, talk with your doctor.

In addition to antiviral therapy, descriptions of the most common treatment options for Kaposi sarcoma are listed below. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and surrounding tissue (called a margin) during an operation. Surgery may be performed by a surgical oncologist, a doctor who specializes in treating cancer using surgery. Surgery is most useful when the lesions are located in a single area or a few specific areas. Two types of surgical procedures used for Kaposi sarcoma are:

Curettage and electrodesiccation. During this procedure, the cancer is removed with a curette, a sharp, spoon-shaped instrument. The area can then be treated with electrodesiccation, which uses an electric current to control bleeding and destroy any remaining cancer cells. Many patients have a flat, pale scar from this procedure.

Cryosurgery. Cryosurgery (also called cryotherapy or cryoablation) uses liquid nitrogen to freeze and destroy cells. The skin will later blister and slough off (shed off). This procedure will sometimes leave a pale scar. More than one freezing may be needed.

Learn more about cancer surgery.

Photodynamic therapy

During photodynamic therapy, a light-sensitive substance is injected into the lesion. This substance remains in the cancerous cells longer than the healthy cells. A laser is then directed at the lesion to destroy the cancerous cells that have absorbed the light-sensitive substance.

Radiation therapy

Radiation therapy uses high-energy x-rays or other particles to kill cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. Traditional external-beam radiation therapy delivers x-rays from a machine outside the body to remove the tumor. It may also be given as a palliative treatment (care given to improve quality of life by treating the symptoms and side effects of the cancer or its treatment). A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Treatment may cause a rash, dry or red skin, or it may change the color of the skin. Other side effects from radiation therapy may include fatigue, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication. A chemotherapy regimen usually consists of a specific number of cycles given over a set period of time. Sometimes, chemotherapy is injected directly into the lesion to kill the cancer cells, called intralesional injections.

A patient may receive one drug at a time or combinations of different drugs at the same time. Commonly used drugs for epidemic Kaposi sarcoma are liposomal doxorubicin (Doxil, Rubex), paclitaxel (Taxol), and vinorelebine (Navelbine).

The side effects of chemotherapy depend on the individual and the dose used, but they may include nausea and vomiting, hair loss, loss of appetite, diarrhea, fatigue, low blood count, bleeding or bruising after minor cuts or injuries, numbness and tingling in the hands or feet, headaches, and darkening of the skin and fingernails. These side effects usually go away once treatment is finished.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Immunotherapy

Immunotherapy (also called biologic therapy) is designed to boost the body’s natural defenses to fight cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Sometimes, Kaposi sarcoma responds well to alpha-interferon (Roferon-A [2a], Intron A [2b], Alferon [2a]), which appears to work by changing proteins on the surface of the cancer cells and by slowing their growth. The most common side effects of immunotherapy are a decreased white blood cell count and flu-like symptoms. Learn more about immunotherapy.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, and radiation therapy. Talk with your doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and supportive care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it is addressed as quickly as possible. Learn more about palliative care.   

Recurrent Kaposi sarcoma

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED. 

A remission can be temporary or permanent. This uncertainty leads to many survivors feeling worried or anxious that the cancer will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the cancer returning. Understanding the risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence

If the cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence, including whether the cancer’s stage has changed. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the therapies described above (such as surgery, chemotherapy, and radiation therapy), but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer.

People with recurrent cancer often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

Metastatic Kaposi sarcoma

If cancer has spread to another location in the body, it is called metastatic cancer. Patients with this diagnosis are encouraged to talk with doctors who are experienced in treating this stage of cancer because there can be different opinions about the best treatment plan. Learn more about seeking a second opinion before starting treatment, so you are comfortable with the treatment plan chosen. This discussion may include clinical trials.

Your health care team may recommend a treatment plan that includes a combination of surgery, radiation therapy, and chemotherapy. Supportive care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of metastatic cancer is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

If treatment fails

Recovery from cancer is not always possible. If treatment is not successful, the disease may be called advanced or terminal cancer.

This diagnosis is stressful, and this is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced cancer and who are expected to live less than six months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and bereavement.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat patients with Kaposi sarcoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating Kaposi sarcoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with Kaposi sarcoma.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

For specific topics being studied for Kaposi sarcoma, learn more in the Latest Research section.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

The next section helps explain the areas of research going on today about this type of cancer. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about Kaposi sarcoma, including ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

Targeted therapy. Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. Because blood vessels make up a large part of Kaposi sarcoma lesions, researchers are studying treatments focused on stopping angiogenesis, which is the process of making new blood vessels. The goal of anti-angiogenesis therapy is to block the formation of new blood vessels so that the nutrients a tumor needs to grow and spread cannot be delivered, literally "starving" the tumor.

New HIV/AIDS treatment. New and better treatments for HIV/AIDS means that fewer people are developing Kaposi sarcoma. Improved HIV/AIDS treatments in the future may further reduce the risk of Kaposi sarcoma.

Combination chemotherapy. Combination chemotherapy uses more than one drug (given together) to treat Kaposi sarcoma. In addition to more than one type of chemotherapy, researchers are also looking at combinations of chemotherapy and antiretroviral drugs, which are normally used to treat patients with HIV/AIDS.

Virus research. Research is ongoing to learn more about HHV-8 and its link to Kaposi sarcoma.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current Kaposi sarcoma treatments in order to improve patients’ comfort and quality of life.

To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trials databases now. Please note this link will take you outside this guide.

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of cancer, but it may help to know that preventing and controlling side effects is a major focus of your health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for Kaposi sarcoma are described in detail within the Treatment Options section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the cancer’s stage, the length and dosage of treatment(s), and your overall health.

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with Kaposi sarcoma. Learn more about caregiving.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies. Learn more about the importance of addressing such needs, including concerns about managing the cost of your cancer care

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your doctor.

The next section helps explain medical tests and check-ups needed after finishing cancer treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will read about your medical care after cancer treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for Kaposi sarcoma ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. Patients with HIV/AIDS-related Kaposi sarcoma should keep taking antiviral therapy (HAART) because it reduces their risk of infections and can help keep Kaposi sarcoma from getting worse.

ASCO offers cancer treatment summary forms to help keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

People recovering from Kaposi sarcoma are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about the next steps to take in survivorship, including making positive lifestyle changes.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

General questions

  • What type of Kaposi sarcoma do I have, and what does this mean?
  • Can you explain my pathology report (laboratory test results) to me?
  • What are my treatment options?
  • What clinical trials are open to me?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?
  • Do I need treatment right away?
  • [If applicable] How will my HIV infection be managed during cancer treatment?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment and follow-up care?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
  • Could this treatment affect my sex life? If so, how and for how long?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?
  • If I’m worried about managing the costs related to my cancer care, who can help me with these concerns?
  • Whom should I call for questions and problems?

For patients who need surgery

  • What type of surgery do you recommend?
  • What are the common side effects of this surgery?
  • Will I need to stay in the hospital for this surgery? For how long?

For patients who need chemotherapy, immunotherapy, or anti-viral treatment

  • What type of therapy am I getting?
  • What do I need to do to get ready for this treatment?
  • What are the side effects of this treatment?
  • What can be done to relieve the side effects?

For patients who need radiation therapy

  • What type of radiation therapy am I getting?
  • What does the preparation for this treatment involve?
  • What do I need to do to get ready for this treatment?
  • What are the potential side effects of this treatment?
  • What can be done to prevent or manage these side effects?

After treatment

  • What are the chances that the cancer will return?
  • What follow-up tests do I need, and how often do I need them?
  • What support services are available to me? To my family?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Sarcoma - Kaposi - Patient Information Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2013

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Kaposi Sarcoma. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond. Here are a few sections that may get you started in exploring the rest of Cancer.Net:

This is the end of Cancer.Net’s Guide to Kaposi Sarcoma. Use the menu on the side of your screen to select another section to continue reading this guide.