Sarcoma - Kaposi - Introduction
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. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.
About Kaposi sarcoma
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 lining of the mouth, nose, or anus. Areas where tissues have abnormal changes are known as Kaposi sarcoma lesions. These lesions usually appear on the skin as raised blotches or nodules. They may be purple, red, blue, brown, or black. When viewed under a microscope, Kaposi sarcoma cells resemble blood vessels.
Types of Kaposi sarcoma
There are several types of Kaposi sarcoma:
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Classic Kaposi sarcoma. Classic Kaposi sarcoma was first described in the late 1800s. It 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 in women, and lesions may develop slowly over a period of 10 to 15 years.
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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 now the most common type of Kaposi sarcoma. 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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Acquired Kaposi sarcoma. Acquired Kaposi sarcoma develops in people whose immune systems are depressed, typically due to taking drugs to suppress their immune system because of an organ transplant or an autoimmune disease. Because this treatment lowers the function of the immune system, additional 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 people 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.
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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.
Looking for More of an Introduction?
If you would like more of an introduction, explore these related items. Please note that these links will take you to another section on Cancer.Net:
- Cancer.Net Blog: Read an ASCO expert’s opinion about what newly diagnosed patients should know about sarcoma.
The next section in this guide is Statistics . It helps explain the number of people who are diagnosed with Kaposi sarcoma and general survival rates. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Statistics
ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with Kaposi sarcoma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.
How many people are diagnosed with Kaposi sarcoma?
Before the human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) were widespread, Kaposi sarcoma was extremely rare in the United States, with about 2 people diagnosed for every 1 million people. By the early 1990s, that rate had increased to about 47 people per 1 million people due to HIV/AIDS. However, 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. Worldwide, an estimated 34,270 people were diagnosed with Kaposi sarcoma in 2020.
In 2020, an estimated 15,086 people died from Kaposi sarcoma globally.
What is the survival rate for Kaposi sarcoma?
There are different types of statistics that can help doctors evaluate a person’s chance of recovery from Kaposi sarcoma. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with Kaposi sarcoma are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.
Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.
It is important to remember that statistics on the survival rates for people with Kaposi sarcoma are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
The 5-year relative survival rate for Kaposi sarcoma in the United States is 75%.
The survival rates for Kaposi sarcoma vary based on several factors. These include the stage of cancer, a person’s age and general health, and how well the treatment plan works. More effective treatments for HIV/AIDS are improving the survival rate both by treating the infections associated with HIV/AIDS and the Kaposi sarcoma.
If the cancer is localized, the 5-year relative survival rate is 81%. If the cancer is regional, the 5-year relative survival rate is 65%. If the cancer has spread to distant parts of the body, the 5-year relative survival rate is 47%.
Experts measure relative survival rate statistics for Kaposi sarcoma every 5 years. This means the estimate may not reflect the results of advancements in how Kaposi sarcoma is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics .
Statistics adapted from the websites of the American Cancer Society and the International Agency for Research on cancer. (All sources accessed March 2023.)
The next section in this guide is Risk Factors and Prevention . It describes the factors that may increase the chance of developing Kaposi sarcoma and what may lower your risk. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Risk Factors and Prevention
ON THIS PAGE: You will find out more about the factors that increase the chance of developing Kaposi sarcoma. Use the menu to see other pages.
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. 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:
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Ethnicity. People of Jewish or Mediterranean descent, as well as equatorial Africans, have a higher risk of developing Kaposi sarcoma.
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Sex. Men have a higher risk of developing Kaposi sarcoma than women.
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Human herpesvirus 8 (HHV-8). This virus, also called the Kaposi sarcoma herpesvirus (KSHV), can cause Kaposi sarcoma. However, most people with HHV-8 infection do not develop Kaposi sarcoma. The cancer appears most often when a person with HHV-8 also has problems with their immune system function.
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Immune deficiency. People with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) and people whose immune systems are suppressed after organ transplantation have a higher risk of developing Kaposi sarcoma.
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Sexual activity. Unprotected sexual activity can increase the risk of infection with HHV-8 as well as HIV, because these viruses are spread through bodily fluids. Learn more about HIV/AIDS-related cancer .
Prevention
Different factors cause different types of cancer. Researchers continue to look into what factors cause Kaposi sarcoma, including ways to prevent it. 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, especially by avoiding risky practices, such as having unprotected sex and using intravenous (IV) needles that have been used by someone else. Talk with your health care team for more information about your personal risk of Kaposi sarcoma.
The next section in this guide is Symptoms and Signs . It explains what changes or medical problems Kaposi sarcoma can cause. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Symptoms and Signs
ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.
People with Kaposi sarcoma may experience the following symptoms or signs, especially if they also have human immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS). Symptoms are changes that you can feel in your body. Signs are changes in something measured, like by taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, people with Kaposi sarcoma do not have any of the symptoms or signs described below. Or, the cause of a symptom or sign may be a medical condition that is not cancer.
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Slightly elevated purple, pink, brown, black, blue, or red blotches or bumps anywhere on the skin or in the mouth and/or throat
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Lymphedema , which is swelling caused by a blockage of the lymphatic system
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Unexplained cough or chest pain
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Unexplained stomach or intestinal pain
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Diarrhea and/or blockage of the digestive tract, which can be caused by Kaposi sarcoma lesions that have developed in the gastrointestinal tract
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 figure out the cause of the problem, called a diagnosis.
If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. Managing symptoms may also be called "palliative care" or "supportive care." It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your health care team about the 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. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Diagnosis
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. Use the menu to see other pages.
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 the cancer has spread, it is called metastasis. 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 if 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.
How Kaposi sarcoma is diagnosed
There are many tests used for diagnosing Kaposi sarcoma. Not all tests described here will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:
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The type of cancer suspected
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Your signs and symptoms
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Your age and general health
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The results of earlier medical tests
In addition to a physical examination, a biopsy 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. 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 find out if Kaposi sarcoma has spread to internal organs, any of the following examinations may be performed:
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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.
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Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can 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 or liquid to swallow.
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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.
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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.
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Photography. Because many skin lesions can develop in different parts of the body, doctors may regularly take pictures of 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 the results with you. If the diagnosis is Kaposi sarcoma, 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. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Stages
ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. Use the menu to see other pages.
What is cancer staging?
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 recommend the best kind of treatment, and it can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.
For classic, endemic, and acquired Kaposi sarcoma, there are no official staging systems. Instead, the health care team develops a treatment plan based on the individual's specific situation. This may include whether the disease is growing and spreading, if the sarcoma has spread to organs, how well the immune system is functioning, and other factors.
For epidemic Kaposi sarcoma, there is also no official staging system. However, in 1988 the AIDS Clinical Trials Group (ACTG) developed a staging system called the TIS system. (Please note this link takes you to a separate website.) The ACTG is the largest human immunodeficiency virus (HIV) clinical trials organization in the world and is funded by the U.S. National Institutes of Health. The treatment of HIV has changed a lot since 1988. Therefore, it is unclear if the TIS system is still clinically useful.
The TIS system evaluates:
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Tumor (T): The size of the tumor.
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Immune system (I): 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.
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Systemic illness (S): The spread of the disease throughout the body or the presence of HIV-related or acquired immune deficiency syndrome (AIDS)-related systemic illness.
Within each of the 3 parts of the system, there are 2 subgroups: good risk (0, zero) or poor risk (1).
The following table has been adapted from the original system, which was developed by the ACTG to illustrate the TIS system.
|
Good Risk (0) (Any of the following) |
Poor Risk (1) (Any of the following) |
|
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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 No “B” symptoms, which include unexplained fever, night sweats, greater than 10% involuntary weight loss, or diarrhea for more than 2 weeks A Karnofsky Performance Status score of 70 or higher (see below) |
History of systemic illness and/or thrush One or more “B” symptoms are present 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. For example, people with a score of 70 can take care of themselves but are unable to carry on normal activity or active work. People with a score of less than 70 are unable to care for themselves.
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 specific treatment plan. The next section in this guide is Types of Treatment . Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Types of Treatment
ON THIS PAGE: You will learn about the different types of treatments doctors use for people with Kaposi sarcoma. Use the menu to see other pages.
This section explains the types of treatments, also known as therapies, that are the standard of care for Kaposi sarcoma. “Standard of care” means the best treatments known. When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials are an option. A clinical trial is a research study that tests a new approach to treatment. Doctors learn through clinical trials whether a new treatment 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. Clinical trials are an option for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.
How Kaposi sarcoma is treated
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 include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.
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 all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of talks are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision-making is particularly important for Kaposi sarcoma because there are different treatment options. Learn more about making treatment decisions .
The common types of treatments used for Kaposi sarcoma are described below. Your care plan also includes treatment for symptoms and side effects, an important part of cancer care.
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Antiretroviral treatment
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Surgery
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Photodynamic therapy
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Radiation therapy
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Chemotherapy
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Targeted therapy
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Topical medications
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Immunotherapy
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Physical, emotional, and social effects of cancer
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Widespread (disseminated) Kaposi sarcoma
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Remission and the chance of recurrence
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If treatment does not work
Antiretroviral treatment
For people with epidemic Kaposi sarcoma, antiretroviral treatment (ART) for human immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS) is usually used before any other treatments to treat the tumor and reduce symptoms. ART may be given by itself or in combination with chemotherapy (see below), depending on the spread of the disease and the person's symptoms.
Rarely, ART 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 ART, talk with your doctor.
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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. There are 2 types of surgical procedures used for Kaposi sarcoma:
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Curettage and electrodesiccation. During this procedure, the cancer is removed with a sharp, spoon-shaped instrument called a curette. The area can then be treated with electrodesiccation, which uses an electric current to control bleeding and destroy any remaining cancer cells. This procedure may leave a scar.
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Cryosurgery. Cryosurgery uses liquid nitrogen to freeze and destroy cells. The skin will later blister and fall away. This procedure will sometimes leave a scar. More than 1 freezing may be needed. This procedure is also called cryotherapy or cryoablation.
Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of cancer surgery .
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Photodynamic therapy
During photodynamic therapy, a light-sensitive substance is injected into the lesion. This substance remains in the cancer cells longer than in the healthy cells. A laser is then directed at the lesion to destroy the cancer cells that have absorbed the light-sensitive substance.
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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 (see below) to improve the patient's 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, or schedule, usually consists of a specific number of treatments given over a set period of time.
Treatment may cause a rash, dry skin, or skin color changes. 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 .
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Therapies using medication
The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may sometimes be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.
This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.
Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications, be sure to ask your health care team about how to safely store and handle them.
The types of medications used for Kaposi sarcoma include:
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Chemotherapy
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Targeted therapy
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Topical medications
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Immunotherapy
Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.
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.
It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your prescriptions by using searchable drug databases .
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Chemotherapy
Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.
A chemotherapy regimen, or 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. Intralesional injections to treat Kaposi sarcoma often use vinblastine (available as a generic drug).
A patient may receive 1 drug at a time or a combination of different drugs given at the same time. Common drugs used for epidemic Kaposi sarcoma include liposomal doxorubicin (Doxil), paclitaxel (available as a generic drug), and vinorelbine (available as a generic drug).
The side effects of chemotherapy depend on the specific drug 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 after treatment is finished.
Learn more about the basics of chemotherapy .
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Targeted therapy
Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.
Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments .
Targeted therapy for Kaposi sarcoma includes:
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Immunomodulatory drugs. Immunomodulatory (or immune-modulating) drugs are medications that change the way the body's immune system works and interacts with tumor cells, and they may also block the formation of new blood vessels in the tumor. Pomalidomide (Pomalyst) is approved by the U.S. Food and Drug Administration (FDA) to treat epidemic Kaposi sarcoma if ART has not been successful, as well as adults with any Kaposi sarcoma who are HIV-negative. In patients with HIV-associated Kaposi sarcoma, the response rate was 67%. In patients who were HIV-negative, the response rate was 80%. The length of response lasted 10 to 12 months on average. The most common side effects were decreased counts of white blood cells and red blood cells, constipation, tiredness, and rash. Other drugs similar to pomalidomide include lenalidomide (Revlimid) and thalidomide (Thalomid), but they have not been approved by the FDA to treat Kaposi sarcoma.
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Kinase inhibitors. Blood vessels make up a large part of Kaposi sarcoma lesions, so researchers are studying treatments focused on stopping angiogenesis, which is the process of making new blood vessels. The goal of anti-angiogenesis therapy using kinase inhibitors 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."
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Topical medications
The treatment plan may include skin creams to shrink or stop the growth of lesions. Topical creams often do not stop all the cancer, but they can improve a person's appearance. Imiquimod (Aldara) cream is used to treat many skin conditions, including basal cell carcinoma and Kaposi sarcoma. Alitretinoin (Panretin) is a gel medication that is related to vitamin A that can make lesions from Kaposi sarcoma go away. The gel is put on the lesions for many weeks.
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Immunotherapy
Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells. Sometimes, Kaposi sarcoma responds to alpha-interferon (Intron A), which appears to work by changing proteins on the surface of the cancer cells and by slowing their growth.
Different types of immunotherapy can cause different side effects. Common side effects of immunotherapy for Kaposi sarcoma are decreased white blood cell count and flu-like symptoms. Talk with your doctor about possible side effects for the immunotherapy recommended for you. Learn more about the basics of immunotherapy .
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Physical, emotional, and social effects of cancer
Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.
Palliative care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.
Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.
Before treatment begins, talk with your doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.
During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.
Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.
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Widespread (disseminated) 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 commonly affects more than 1 area of skin, it is difficult to indicate what is “metastatic” for Kaposi sarcoma, 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. Clinical trials might also 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 therapies using medication. Palliative care will also be important to help relieve symptoms and side effects.
For many people, a diagnosis of widespread Kaposi sarcoma is very stressful and difficult. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of your health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.
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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 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 is 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 returns 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).
If a recurrence happens, a new cycle of testing will begin again to learn as much as possible about it. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, such as antiretroviral treatment (ART), surgery, chemotherapy, radiation therapy, targeted therapy, and immunotherapy, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat recurrent Kaposi sarcoma. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.
People with recurrent cancer sometimes experience emotions such as disbelief or fear. You are encouraged to talk with your health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence .
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If treatment does not work
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 for some people, advanced cancer is difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help. Making sure a person is physically comfortable, free from pain, and emotionally supported is extremely important.
People who have advanced cancer and who are expected to live less than 6 months may want to consider 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 talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option 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 .
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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. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - About Clinical Trials
ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.
What are clinical trials?
Doctors and scientists are always looking for better ways to care for people with Kaposi sarcoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.
Clinical trials are used for all types and stages of Kaposi sarcoma. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.
People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.
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.
Deciding to join a clinical trial
People decide to participate in clinical trials for many reasons. For some, 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. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating Kaposi sarcoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with Kaposi sarcoma.
Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials .
Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” Placebos are usually combined with standard treatment in most cancer clinical trials. Study participants will always be told 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, people must participate in a process known as informed consent. During informed consent, the doctor should:
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Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.
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List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.
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Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.
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Describe the purposes of the clinical trial and what researchers are trying to learn.
Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials .
People who participate in a clinical trial may stop participating at any time for personal or medical reasons. 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 people 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 they choose 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 more 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, you can find a free video-based educational program about cancer clinical trials in another section of this website.
The next section in this guide is Latest Research . It explains areas of scientific research for Kaposi sarcoma. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Latest Research
ON THIS PAGE: You will read about the scientific research being done to learn more about Kaposi sarcoma and how to treat it. Use the menu to see other pages.
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 best diagnostic and treatment options for you.
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Immunotherapy. As explained in Types of Treatment , immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells. Research studies are investigating the use of immune checkpoint inhibitors in people with Kaposi sarcoma. If an immunotherapy can be found that works against Kaposi sarcoma or against human herpesvirus 8 (HHV-8), such drugs could help eliminate Kaposi sarcoma. However, it is not clear what these drugs do to human immunodeficiency virus (HIV), which is one reason why Kaposi sarcoma can develop in the first place.
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New HIV/AIDS treatment. New and better treatments for HIV and acquired immune deficiency syndrome (AIDS) mean that fewer people are developing Kaposi sarcoma. Improved HIV/AIDS treatments in the future may further reduce the risk of Kaposi sarcoma.
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Combination chemotherapy. Combination chemotherapy uses more than 1 drug (given together) to treat Kaposi sarcoma. In addition to more than 1 type of chemotherapy, researchers are also looking at combinations of chemotherapy and antiretroviral drugs, which are typically used to treat people with HIV/AIDS.
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Virus research. Research is ongoing to learn more about HHV-8 and its link to Kaposi sarcoma.
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Palliative care/supportive care . Clinical trials are underway to find better ways of reducing symptoms and side effects of current Kaposi sarcoma treatments to improve comfort and quality of life for patients.
Looking for More About the Latest Research?
If you would like more information about the latest areas of research in Kaposi sarcoma, explore these related items that take you outside of this guide:
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To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases .
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Visit the website of Conquer Cancer, the ASCO Foundation , to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.
The next section in this guide is Coping with Treatment . It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Coping with Treatment
ON THIS PAGE: You will find out more about steps to take to help cope with physical, emotional, social, and financial side effects. Use the menu to see other pages.
Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are 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. This part of cancer treatment is called palliative care or supportive 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 in the Types of Treatment 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.
Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.
You may find it helpful to keep track of your side effects so it is easier to talk about any changes with your health care team. Learn more about why tracking side effects is helpful .
Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called 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 after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, or anger, or managing your stress level. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.
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 the costs of cancer care
Cancer treatment can be expensive. It may be a 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 of medical care 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. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.
Coping with barriers to care
Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health , such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities , people with fewer financial resources , sexual and gender minorities (LGBTQ+) , adolescent and young adult populations , older adults , and people who live in rural areas or other underserved communities .
If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people .
Talking with your health care team about side effects
Before starting treatment, talk with your doctor about possible side effects. Ask:
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Which side effects are most likely?
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When are they likely to happen?
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What can we do to prevent or relieve them?
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When and who should we call about side effects?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.
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. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves .
Caregivers may have a range of responsibilities on a daily or as-needed basis, including:
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Providing support and encouragement
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Talking with the health care team
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Giving medications
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Helping manage symptoms and side effects
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Coordinating medical appointments
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Providing a ride to and from appointments
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Assisting with meals
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Helping with household chores
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Handling insurance and billing issues
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.
Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish .
Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
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Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.
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ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to help patients record how pain affects them. The free booklet is available as a PDF, so it is easy to print.
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ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression , constipation , diarrhea , rash , and immunotherapy side effects that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.
The next section in this guide is Follow-up Care . It explains the importance of checkups after you finish cancer treatment. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Follow-Up Care
ON THIS PAGE: You will read about your medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.
Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, 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. People with Kaposi sarcoma related to human immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS) should keep taking antiretroviral treatment (ART) because it reduces their risk of infections and can help keep Kaposi sarcoma from getting worse.
Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational 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 as possible. Learn more about cancer rehabilitation .
Learn more about the importance of follow-up care .
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. 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 ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress .
Managing long-term and late side effects
Most people expect to have 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. Other side effects called late effects may develop months or even years after treatment has ended. 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 your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may 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 discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.
This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their primary care 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 them and with 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. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Survivorship
ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to see other pages.
What is survivorship?
The word “survivorship” is complicated because it means different things to different people. Common definitions include:
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Having no signs of cancer after finishing treatment.
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Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person’s life.
For some, even the term “survivorship” does not feel right, and they prefer to use different language to describe and define their experience. Sometimes extended treatment will be used for months or years to manage or control cancer. Living with cancer indefinitely is not easy, and the health care team can help you manage the challenges that come with it . Everyone has to find their own path to name and navigate the changes and challenges that are the results of their cancer diagnosis and treatment.
Survivors may experience a mixture of 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 about coping with everyday life. Feelings of fear and anxiety may still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.
Survivors may feel some stress when their frequent visits to the health care team end after completing 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 when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health 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:
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Understanding the challenge you are facing
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Thinking through solutions
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Asking for and allowing the support of others
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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 place where you received treatment.
A new perspective on your health
For many people, survivorship serves as a strong motivator to make lifestyle changes.
People recovering from Kaposi sarcoma are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, 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 .
It is important to have recommended medical checkups and tests (see Follow-up Care ) to take care of your health.
Talk with your health care team to develop a survivorship care plan that is best for your needs.
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 .
Looking for More Survivorship Resources?
For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:
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ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.
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Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children , teens and young adults , and people over age 65 . There is also a main section on survivorship for people of all ages.
The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Questions to Ask the Health Care Team
ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.
Talking often with the health care team 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 a digital list and other interactive tools to manage your care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.
Questions to ask after getting a diagnosis
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Which clinical type of Kaposi sarcoma do I have?
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Can you explain my pathology report (laboratory test results) to me?
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How advanced is the Kaposi sarcoma? What does this mean?
Questions to ask about choosing a treatment and managing side effects
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What are my treatment options?
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What clinical trials are available for me? Where are they located, and how do I find out more about them?
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What treatment plan do you recommend? Why?
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What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?
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Do I need treatment right now?
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If I have HIV (human immunodeficiency virus), how will the HIV be managed during cancer treatment?
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What are the possible side effects of this treatment, both in the short term and the long term?
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Who will be part of my health care team, and what does each member do?
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Who will be leading my overall treatment and follow-up care?
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How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
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Could this treatment affect my sex life? If so, how and for how long?
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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?
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If I’m worried about managing the costs of cancer care, who can help me?
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What support services are available to me? To my family?
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If I have questions or problems, who should I call?
Questions to ask about having surgery
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What type of surgery will I have?
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How long will the operation take?
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How long will I be in the hospital?
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Can you describe what my recovery from surgery will be like?
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Who should I contact about any side effects I experience? And how soon?
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What are the common side effects of this surgery?
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What are the possible long-term effects of having this surgery?
Questions to ask about having radiation therapy
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What type of treatment is recommended?
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What is the goal of this treatment?
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How long will it take to give this treatment?
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What side effects can I expect during treatment?
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Who should I contact about any side effects I experience? And how soon?
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What are the possible long-term or late effects of having this treatment?
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What can be done to prevent or relieve the side effects?
Questions to ask about having therapy using medication
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What type of treatment is recommended?
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What is the goal of this treatment?
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How long will it take to give this treatment?
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Will I receive this treatment at a hospital or clinic? Or will I take it at home?
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What side effects can I expect during treatment?
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Who should I contact about any side effects I experience? And how soon?
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What are the possible long-term or late effects of having this treatment?
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What can be done to prevent or relieve the side effects?
Questions to ask about planning follow-up care
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What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?
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What long-term side effects or late effects are possible based on the cancer treatment I received?
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What follow-up tests will I need, and how often will those tests be needed?
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How do I get a treatment summary and survivorship care plan to keep in my personal records?
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Who will be leading my follow-up care?
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What survivorship support services are available to me? To my family?
The next section in this guide is Additional Resources . It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.
Sarcoma - Kaposi - Additional Resources
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. Use the menu to go back and see other pages.
Cancer.Net includes many other sections about the medical and emotional aspects of cancer 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 links to help you explore other parts of Cancer.Net:
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Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology.
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Learn what medical phrases and terms used in cancer care and treatment mean.
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Read more about the first steps to take when you are diagnosed with cancer .
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Find out more about clinical trials as a treatment option.
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Get information about managing the financial costs of cancer care.
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Learn more about coping with the emotions that cancer can bring, including those within a family or a relationship.
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Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for people with Kaposi sarcoma.
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Explore what to do when you finish active treatment .
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Download Cancer.Net Mobile , a free app that includes a symptom and side effect tracker, medication reminders, and other interactive resources.
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To find a range of information and insights from different voices on timely cancer topics, visit the Cancer.Net Blog .
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Watch Cancer.Net videos with ASCO experts explaining the basics of cancer treatment, side effects, survivorship, clinical trials, caregiving, and more.
This is the end of Cancer.Net’s Guide to Kaposi Sarcoma. Use the menu to choose a different section to read in this guide.
