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Sarcoma - Kaposi - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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. Think of that menu as a roadmap to this full guide.

Cancer begins when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

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 located below the skin's surface or in the mucous membranes of the mouth, nose, or anus. Areas of abnormal tissue change, known as Kaposi sarcoma lesions, usually appear on the skin as raised blotches or nodules. These lesions 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 on 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 generally develop the disease at a younger age. A particularly aggressive form of Endemic Kaposi sarcoma can develop in children who have not yet reached puberty. It usually involves 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, immunosuppressive treatment-related, or transplant-related Kaposi sarcoma develops in people who have received an organ transplant and are taking drugs to suppress their immune system to prevent their body from rejecting the transplanted organ. Because this treatment lowers the function of 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.

Looking for More of an Introduction?

If you would like more of an introduction, explore this related item. Please note that this link will take you to other sections on Cancer.Net:

  • Cancer.Net Patient Education VideoView a short video led by an ASCO expert in sarcoma that provides basic information and areas of research.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.   

Sarcoma - Kaposi - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

ON THIS PAGE: You will find information about how many people are diagnosed with this type of sarcoma each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu.

Kaposi sarcoma occurs in less than 1% of the general population. Before HIV/AIDS was widespread, Kaposi sarcoma was rare in the United States, with about 2 people diagnosed for every 1 million Americans. By the early 1990s, that rate had increased to about 47 cases per 1 million people, most of which were people with HIV/AIDS. This number has significantly decreased in recent years to about 6 cases per 1 million people because of more effective treatments for HIV/AIDS. About 1 in 200 transplant recipients in the United States develops Kaposi sarcoma.

The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. When HIV and AIDS first became widespread, the 5-year survival rate of people with Kaposi sarcoma was less than 10%. Now the most recent data from the National Cancer Institute shows 5-year survival rates of about 72%. More effective treatments for HIV/AIDS are improving the survival rate both by treating the infections associated with HIV/AIDS and the Kaposi sarcoma. Other factors also affect survival, including the risk grouping of Kaposi sarcoma.

It is important to remember that statistics on how many people survive this type of cancer are an estimate. The estimate comes from data based on thousands of people with this cancer in the United States. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with Kaposi sarcoma. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society and the National Cancer Institute.

The next section in this guide is Risk Factors and Prevention. It explains what factors may increase the chance of developing this disease and what may lower your risk. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Risk Factors and Prevention

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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

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, also called the Kaposi sarcoma herpesvirus (KSHV), may cause Kaposi sarcoma. However, most people with HHV-8 do not develop Kaposi sarcoma. The cancer appears most often when a person with HHV-8 also has impaired immune system function.

  • 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. Men who have sex with men have a higher risk of infection with HHV-8 as well as HIV. Learn more about HIV/AIDS-related cancer.

Prevention

Different factors cause different types of cancer. Researchers continue to look into what factors cause this type of cancer. Although there is no proven way to completely prevent Kaposi sarcoma, you can significantly lower your 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 for more information about your personal risk of Kaposi sarcoma.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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.

People with Kaposi sarcoma may experience the following symptoms or signs. Sometimes, people with Kaposi sarcoma do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer.

  • Lesions in the mouth and/or throat

  • Slightly elevated purple, pink, brown, or red blotches or bumps anywhere on the skin

  • Lymphedema, which is swelling caused by a blockage of the lymphatic 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

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms 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 in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

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:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

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

  • Biopsy. 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. A pathologist then analyzes the sample(s). A pathologist is 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 3-dimensional picture of the inside of the body using x-rays taken from different angles. 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 special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.

  • Endoscopy. An endoscopy 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. Sedation is giving medication to become more relaxed, calm, or sleepy.

  • 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 pulmonologist is a medical doctor who specializes in lung diseases. The tube lets the doctor see inside the lungs. Tiny tools inside the tube can gather samples of fluid and tissue and remove them for examination by a pathologist. Patients are given mild anesthesia during a bronchoscopy. Anesthesia is medication to block the awareness of pain.

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

After 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 in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Or, use the menu to choose 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.

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 find out 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, which is the 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 throughout the body 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, which was 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 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 illness present

History of systemic illness and/or thrush

No “B” symptoms, which include unexplained fever, night sweats, greater than 10% involuntary weight loss, or diarrhea for 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

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.

Performance status

The Karnofsky Performance Status scale measures the ability of people with cancer to perform ordinary tasks. People with a score of 70 or higher 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        Dying; at the point of death

0          Dead

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide. 

Sarcoma - Kaposi - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About 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. Cancer care teams also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

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. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of 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.

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

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. Surgery may be performed by a surgical oncologist. A surgical oncologist is 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 electrodessication. During this procedure, the cancer is removed with a sharp, spoon-shaped instrument called a curette. The area can then be treated with electrodessication, 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, which is also called cryotherapy or cryoablation, uses liquid nitrogen to freeze and destroy cells. The skin will later blister and fall away. 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 destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. It may also be given as a palliative treatment to improve quality of life by treating symptoms and side effects. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy.

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 the basics of radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. Sometimes, chemotherapy is injected directly into the lesion to destroy the cancer cells. This is called an intralesional injection.

A patient may receive 1 drug at a time or combinations of different drugs at the same time. Common drugs used for epidemic Kaposi sarcoma include liposomal doxorubicin (Doxil), paclitaxel (Taxol), and vinorelbine (Alocrest, 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 the basics of 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 the basics of 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 is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. 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, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or 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 palliative 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 can be addressed as quickly as possible. Learn more about palliative care.  

Metastatic or widespread Kaposi sarcoma

In other types of cancer, if cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. Because Kaposi sarcoma affects more than 1 area of skin, it is difficult to indicate what is “metastatic,” compared to other cancers. However, Kaposi sarcoma is considered more serious if it involves organs other than the skin, such as the lungs, liver, or gastrointestinal tract. If this happens, it is a good idea to talk with doctors who have experience in treating widespread Kaposi sarcoma. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of surgery, radiation therapy, and chemotherapy. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of widespread Kaposi sarcoma 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.

Remission and the chance of recurrence

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

A remission may be temporary or permanent. This uncertainty causes many people to worry 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 your 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. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatments described above, such as antiviral treatment, surgery, chemotherapy, radiation therapy, and immunotherapy, 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. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

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.

If treatment fails

Recovery from cancer is not always possible. If the cancer cannot be cured or controlled, the disease may be called advanced or terminal. 

This diagnosis is stressful, and advanced cancer 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 6 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 loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu to choose 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.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with Kaposi sarcoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. 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 can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

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, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. 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.

Patient safety and informed consent

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.

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. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for Kaposi sarcoma, learn more in the Latest Research section.

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.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide. 

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.    

Sarcoma - Kaposi - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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.

Doctors are working to learn more about Kaposi sarcoma, 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.

  • Kinase inhibitors. Kinase inhibitors are a type of targeted therapy 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. This causes the tumor to "starve."

  • New HIV/AIDS treatment. New and better treatments for HIV/AIDS mean 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.

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

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding Kaposi sarcoma, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for Kaposi sarcoma cancer are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return. 

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with cancer

Family members and friends often play an important role in taking care of a person with Kaposi sarcoma. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. 

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of check-ups after cancer treatment is finished. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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

Care for people diagnosed with cancer doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your overall health. This is called follow-up care. 

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. 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.  

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them. 

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences. 

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu to choose another section to continue reading this guide.  

Sarcoma - Kaposi - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. To see other pages, use the menu.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from Kaposi sarcoma are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note: these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. Or, use the menu to choose 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, 03/2016

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.

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.

Questions to ask after getting a diagnosis

  • What type of Kaposi sarcoma do I have?

  • Can you explain my pathology report (laboratory test results) to me?

  • What stage is the Kaposi sarcoma? What does this mean?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • 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?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment and follow-up care?

  • 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 of cancer care, who can help me?

  • What support services are available to me? To my family?

  • Whom should I call for questions and problems?

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • What type of surgery will I have?

  • How long will the operation take?

  • How long will I be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • What are the common side effects of this surgery?

  • What are the possible long-term effects of having this surgery?

Questions to ask about chemotherapy, immunotherapy, radiation therapy, or antiviral treatment

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records? 

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide. 

Sarcoma - Kaposi - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2016

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.

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.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

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