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HIV and AIDS-Related Cancer - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will find some basic information about these diseases and the parts of the body they may affect. This is the first page of Cancer.Net’s Guide to HIV/AIDS-Related Cancer. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

About HIV/AIDS

Acquired immune deficiency syndrome (AIDS) is a disease of the immune system caused by infection with the human immunodeficiency virus (HIV). HIV is transmitted from person to person most commonly in blood and bodily secretions such as semen. A person with HIV is highly vulnerable to life-threatening conditions because HIV severely weakens the body’s immune system. When HIV infection causes symptoms and specific disease syndromes, the disease is called AIDS.

About HIV/AIDS-related cancer

People with HIV/AIDS have a high risk of developing the following cancers:

  • Kaposi sarcoma

  • Non-Hodgkin lymphoma

  • Cervical cancer

For people with HIV, these three cancers are often called “AIDS-defining conditions.” This means that if a person with an HIV infection has one of these cancers, it can signify the development of AIDS.

The connection between HIV/AIDS and certain cancers is not completely understood, but the link likely depends on a weakened immune system. Most types of cancer begin 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. The types of cancer most common for people with HIV/AIDS are described in more detail below.

Kaposi sarcoma

Kaposi sarcoma is a type of skin cancer that has traditionally occurred in older men of Jewish or Mediterranean descent, young men in Africa, or people who have had organ transplantation. Today, Kaposi sarcoma is found most often in homosexual men with HIV/AIDS and is related to an infection with the human herpesvirus 8 (HHV-8). Kaposi sarcoma in people with HIV is often called epidemic Kaposi sarcoma.

HIV/AIDS-related Kaposi sarcoma causes lesions to arise in more than one area of the body, including the skin, lymph nodes, and organs such as the liver, spleen, lungs, and digestive tract. Learn more about Kaposi sarcoma.

Non-Hodgkin lymphoma

Non-Hodgkin lymphoma (NHL) is a cancer of the lymphatic system. Lymphoma begins when healthy cells in the lymphatic system change and grow out of control, which may form a tumor. The lymphatic system is made up of thin tubes that branch to all parts of the body. Its job is to fight infection. The lymphatic system carries lymph, a colorless fluid containing white blood cells called lymphocytes. Lymphocytes fight germs in the body. Groups of tiny, bean-shaped organs called lymph nodes are located throughout the body at different sites in the lymphatic system. Lymph nodes are found in clusters in the abdomen, groin, pelvis, underarms, and neck. Other parts of the lymphatic system include the spleen, which makes lymphocytes and filters blood; the thymus, an organ under the breastbone; and the tonsils, located in the throat.

There are many different subtypes of NHL. The most common subtypes of NHL in people with advanced HIV/AIDS include:

  • Primary central nervous system lymphoma, which affects the brain

  • Spinal fluid, primary effusion lymphoma, which causes fluid to build up around the lungs or in the abdomen

  • Intermediate and high-grade lymphoma

Recently, doctors have found that even patients with well-controlled HIV/AIDS can develop NHL. Learn more about non-Hodgkin lymphoma.

Cervical cancer

Cervical cancer starts in a woman's cervix, the lower, narrow part of the uterus. The uterus holds the growing fetus during pregnancy. The cervix connects the lower part of the uterus to the vagina and, with the vagina, forms the birth canal. Cervical cancer is also called cancer of the cervix.

Women with HIV/AIDS have a higher risk of developing cervical intraepithelial neoplasia (CIN), a precancerous growth of cells in the cervix that is associated with human papillomavirus (HPV) infection. High-grade CIN can turn into invasive cervical cancer. Learn more about cervical cancer.

Other types of cancer

Less commonly, people with HIV/AIDS may develop the following cancers:

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note these links will take you to other sections on Cancer.Net:

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

HIV and AIDS-Related Cancer - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will find information about how many people are diagnosed with an HIV/AIDS-related cancer 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 is the most common HIV/AIDS-related cancer, and it is more common in men than women. Due to improved HIV treatment, Kaposi sarcoma rates have decreased, with about 6 new people diagnosed each year for every 1 million people in the United States.

Better treatments have also improved survival rates for people with 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%.

NHL is the second most common cancer associated with HIV/AIDS. About 50% of people diagnosed with NHL have already been diagnosed with AIDS, and about 50% of people are diagnosed with NHL and AIDS at the same time.

For people with NHL and HIV/AIDS, the chance of recovery depends on a number of factors, including the stage of the lymphoma, the person’s age, the strength of the person’s immune system, and his or her health history.

Women with HIV/AIDS have a high risk of developing cervical intraepithelial neoplasia (CIN). Over time, CIN can eventually become invasive cervical cancer.

It is important to remember that statistics on how many people survive these types of cancer are an estimate. The estimate comes from data based on thousands of people with these types of cancer in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with HIV- and AIDS-related cancer. 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 National Cancer Institute and the American Cancer Society.

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

HIV and AIDS-Related Cancer - Risk Factors and Prevention

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing an HIV/AIDS-related 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 may raise a person’s risk of developing an HIV/AIDS-related cancer:

  • Human papillomavirus (HPV). Research shows that infection with this virus is a risk factor for some cancers, such as cervical cancer. HPV is most commonly passed from person to person during sexual activity. Sexual activity with someone who has HPV is the most common way someone gets HPV. There are different types of HPV, called strains. Research links some HPV strains more strongly with certain types of cancers. There are vaccines available to protect you from some HPV strains.

  • HHV-8. HHV-8 is related to other herpes viruses, such as the viruses that cause cold sores and genital herpes, as well as cytomegalovirus (CMV). Other herpes viruses, however, are not the same as HHV-8 and are not thought to be risk factors for cancer. HHV-8 infection is associated with Kaposi sarcoma and primary effusion lymphoma (see Introduction).

  • Epstein Barr virus (EBV). EBV is a herpes-related virus that causes mononucleosis. It is also associated with primary central nervous system lymphoma, high-grade B-cell lymphoma, and primary effusion lymphoma.

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 and HIV/AIDS-related cancer, you may be able to lower your risk. Talk with your doctor for more information about your personal risk of cancer.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems an HIV/AIDS-related cancer can cause. Or, use the menu to choose another section to continue reading this guide.

HIV and AIDS-Related Cancer - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 an HIV/AIDS-related 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

The following tests may be used to diagnose an HIV/AIDS-related cancer or determine if or where it has spread:

  • 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.

  • 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 is usually injected into a patient’s vein. CT scans of the chest and abdomen can help find cancer that has spread to the lungs, lymph nodes, or liver.

Kaposi Sarcoma

  • Endoscopy. An endoscopy allows the doctor to see the 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. If abnormal areas are found, the doctor can remove a sample of tissue and check it for cancer. The doctor can examine the large intestine with a specific endoscopic procedure called a colonoscopy.

  • Bronchoscopy. A bronchoscopy allows the doctor to see inside the lungs with a thin, lighted, flexible tube called a bronchoscope. The person is sedated as the tube is inserted through 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 doctor who specializes in lung disease. Tiny tools inside the tube can collect samples of fluid and tissue, so the pathologist can examine the samples.

  • 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.

  • Photography. Because multiple and scattered skin lesions can develop, doctors regularly photograph parts of the skin in order to find out whether new lesions have developed over time. This is sometimes called mapping.

Non-Hodgkin Lymphoma

  • Blood tests. Many different blood tests provide information about a lymphoma diagnosis, the disease’s effect on the body, and how well treatment is working.

  • Bone marrow aspiration and biopsy. Lymphoma often spreads to the bone marrow, and looking at a sample of the bone marrow can be important for doctors to diagnose lymphoma and to find out if it has spread. A bone marrow aspiration and biopsy are similar procedures and often done at the same time. Bone marrow has both a solid and a liquid part. An aspiration removes a sample of fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. A pathologist then analyzes the sample(s). A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used.

  • Molecular testing of the lymphoma cells. Your doctor may recommend running laboratory tests on a sample of the lymphoma cells to identify specific genes, proteins, and other factors unique to the tumor. Results of these tests will help decide whether your treatment options include a type of treatment called targeted therapy (see Treatment Options).

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the brain and spinal column. MRI can also be used to measure the tumor’s size. In addition, MRIs create more detailed pictures of soft tissues and nerves than CT scans. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye is usually injected into a patient’s vein.

  • Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

  • Positron emission tomography (PET) scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

Most subtypes of lymphoma often show up very well on PET scans. Many oncologists will recommend a PET scan as part of the initial evaluation, especially for the types of lymphoma that are more likely to grow quickly. A PET scan may also help doctors monitor how well treatment is working. There is some evidence that using a PET scan after initial cycles of treatment may be a useful way to predict if that treatment is likely to completely get rid of Hodgkin lymphoma. It may possibly also help with some types of aggressive NHL, such as diffuse large B-cell lymphoma. A negative PET scan means that there are no signs of lymphoma found during this test. A negative PET scan after finishing all treatment cycles is linked with a better chance of recovery from aggressive B-cell and follicular types of lymphoma.

Cervical Cancer

  • Pap test. During a Pap test, the doctor gently scrapes the outside of the cervix and vagina and takes samples of the cells for testing.

  • Colposcopy. The doctor may do a colposcopy to check the cervix for abnormal areas. A special instrument called a colposcope is used. A colposcope is an instrument that magnifies the cells of the cervix and vagina, similar to a microscope. The colposcope gives the doctor a lighted, magnified view of the tissues of the vagina and the cervix. The colposcope is not inserted into the woman’s body. This examination is not painful, can be done in the doctor's office, and has no side effects. It can even be done on pregnant women.

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 an HIV/AIDS-related cancer. Or, use the menu to choose another section to continue reading this guide.

HIV and AIDS-Related Cancer - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 an HIV/AIDS-related 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

The following tests may be used to diagnose an HIV/AIDS-related cancer or determine if or where it has spread:

  • 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.

  • 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 is usually injected into a patient’s vein. CT scans of the chest and abdomen can help find cancer that has spread to the lungs, lymph nodes, or liver.

Kaposi Sarcoma

  • Endoscopy. An endoscopy allows the doctor to see the 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. If abnormal areas are found, the doctor can remove a sample of tissue and check it for cancer. The doctor can examine the large intestine with a specific endoscopic procedure called a colonoscopy.

  • Bronchoscopy. A bronchoscopy allows the doctor to see inside the lungs with a thin, lighted, flexible tube called a bronchoscope. The person is sedated as the tube is inserted through 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 doctor who specializes in lung disease. Tiny tools inside the tube can collect samples of fluid and tissue, so the pathologist can examine the samples.

  • 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.

  • Photography. Because multiple and scattered skin lesions can develop, doctors regularly photograph parts of the skin in order to find out whether new lesions have developed over time. This is sometimes called mapping.

Non-Hodgkin Lymphoma

  • Blood tests. Many different blood tests provide information about a lymphoma diagnosis, the disease’s effect on the body, and how well treatment is working.

  • Bone marrow aspiration and biopsy. Lymphoma often spreads to the bone marrow, and looking at a sample of the bone marrow can be important for doctors to diagnose lymphoma and to find out if it has spread. A bone marrow aspiration and biopsy are similar procedures and often done at the same time. Bone marrow has both a solid and a liquid part. An aspiration removes a sample of fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. A pathologist then analyzes the sample(s). A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used.

  • Molecular testing of the lymphoma cells. Your doctor may recommend running laboratory tests on a sample of the lymphoma cells to identify specific genes, proteins, and other factors unique to the tumor. Results of these tests will help decide whether your treatment options include a type of treatment called targeted therapy (see Treatment Options).

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the brain and spinal column. MRI can also be used to measure the tumor’s size. In addition, MRIs create more detailed pictures of soft tissues and nerves than CT scans. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye is usually injected into a patient’s vein.

  • Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

  • Positron emission tomography (PET) scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

    Most subtypes of lymphoma often show up very well on PET scans. Many oncologists will recommend a PET scan as part of the initial evaluation, especially for the types of lymphoma that are more likely to grow quickly. A PET scan may also help doctors monitor how well treatment is working. There is some evidence that using a PET scan after initial cycles of treatment may be a useful way to predict if that treatment is likely to completely get rid of Hodgkin lymphoma. It may possibly also help with some types of aggressive NHL, such as diffuse large B-cell lymphoma. A negative PET scan means that there are no signs of lymphoma found during this test. A negative PET scan after finishing all treatment cycles is linked with a better chance of recovery from aggressive B-cell and follicular types of lymphoma.

Cervical Cancer

  • Pap test. During a Pap test, the doctor gently scrapes the outside of the cervix and vagina and takes samples of the cells for testing.

  • Colposcopy. The doctor may do a colposcopy to check the cervix for abnormal areas. A special instrument called a colposcope is used. A colposcope is an instrument that magnifies the cells of the cervix and vagina, similar to a microscope. The colposcope gives the doctor a lighted, magnified view of the tissues of the vagina and the cervix. The colposcope is not inserted into the woman’s body. This examination is not painful, can be done in the doctor's office, and has no side effects. It can even be done on pregnant women.

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 an HIV/AIDS-related cancer. Or, use the menu to choose another section to continue reading this guide.

HIV and AIDS-Related Cancer - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 of 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 chance of recovery. There are different stage descriptions for different types of cancers.

Kaposi sarcoma

There is no officially accepted staging system for HIV/AIDS-related Kaposi sarcoma, although 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 type of white blood cell called a CD4 cell (Immune System, I). CD4 lymphocytes have a major regulatory role in the immune system and are infected with and destroyed by HIV.

  • The spread of the disease or the presence of HIV/AIDS-related systemic, or whole body, illness (Systemic Illness, S)

Within each of the 3 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 developed by the ACTG to show the TIS system.

 

 

Good Risk (0)  
(Any of the following) 

Poor Risk (1)
(Any of the following)
 

Tumor (T)

Only located on the skin and/or in the lymph nodes and/or minimal oral disease, which are flat lesions located only on the palate or roof of the mouth

Tumor-associated fluid buildup, called edema, or ulceration

Extensive Kaposi sarcoma in the mouth, called 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; a CD4 count lower than 200 indicates that HIV has developed into AIDS

Systemic illness (S)

No systemic illness present

History of systemic illness and/or thrush

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

One or more “B” symptoms are present

A Karnofsky performance status score of 70 or higher. The Karnofsky Performance Status scale measures the ability of people with cancer to perform ordinary tasks. A score of 70 means that a person can take care of himself or herself, but is unable to carry on normal activity or active work. See below for more about the Karnofsky Performance Status scale.

A Karnofsky performance status of less than 70

Other HIV-related illness is present, such as neurological disease or lymphoma

Karnofsky Performance Score Function

100      Normal, no evidence of disease

90        Able to perform normal activity with only minor symptoms

80        Normal activity with effort, some symptoms

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

60        Requires occasional assistance, cares for most needs

50        Requires considerable assistance

40        Disabled, requires special assistance

30        Severely disabled

20        Very sick, requires active supportive treatment

10        Moribund (dying; at the point of death)

0          Dead

Non-Hodgkin lymphoma

Generally, people with HIV/AIDS-related non-Hodgkin lymphoma have advanced disease when they are first diagnosed. In this case, doctors use a staging system called the Ann Arbor system. This is the same system that is used for non-Hodgkin lymphoma in people who do not have HIV/AIDS.

The stage of lymphoma describes how much the tumor has spread. There are 4 stages: stages I through IV (1 through 4).

Stage I: Either one of these conditions:

  • The cancer is found in 1 lymph node region (stage I).

  • The cancer has invaded 1 organ outside of the lymph node system, which is called an extralymphatic organ, or site, which is identified using the letter “E”, but not any lymph node regions (stage IE).

Stage II: Either one of these conditions:

  • The cancer is in 2 or more lymph node regions on the same side of the diaphragm (stage II).

  • The cancer involves a single organ and the lymph nodes near the site of the cancer, called regional lymph nodes, with or without cancer in other lymph node regions on the same side of the diaphragm (stage IIE).

Stage III and stage IV: There is cancer in lymph node areas on both sides of the diaphragm (stage III), or the cancer has spread throughout the body beyond the lymph nodes (stage IV). Lymphoma most often spreads to the liver, bone marrow, or lungs. Stage III and stage IV lymphomas are common and are is still very treatable. Stage III and IV are now considered 1 category because treatment and prognosis do not differ between them.

Progressive: The disease is called progressive if the cancer becomes larger or spreads while the patient is receiving treatment for the original lymphoma. This is also called refractory NHL.

Recurrent: Recurrent lymphoma is lymphoma that has come back after treatment. It may return in the area where it first started or in another part of the body. Recurrence may occur shortly after the first treatment or years later. If the lymphoma does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Cervical cancer

The staging of HIV/AIDS-related cervical cancer is the same system used for women with cervical cancer who do not have HIV. Doctors look at three factors to determine the stage of cancer: the tumor itself, the lymph nodes around the tumor, and if the tumor has spread to the rest of the body. The results are combined to determine the stage of cancer for each person. There are 5 stages: stage 0 (zero) and stages I through IV (1through 4).

Stage 0: The tumor is called carcinoma in situ. In other words, the cancer is found only in the first layer of cells lining the cervix, not in the deeper tissues. Carcinoma in situ is not considered an invasive cancer.

Stage I: The cancer has spread from the cervix lining into the deeper tissue but is still just found in the uterus. It has not spread to lymph nodes or other parts of the body.

Stage II: The cancer has spread beyond the cervix to nearby areas, such as the vagina or tissue near the cervix, but it is still inside the pelvic area. It has not spread to lymph nodes or other parts of the body.

Stage III: The cancer has spread outside of the cervix and vagina but not to the lymph nodes or other parts of the body.

Stage IIIa: The cancer has spread to the lower part of the vagina but not to other parts of the body.

Stage IIIb: The cancer may have spread as far as the pelvic wall and to lymph nodes but not to other parts of the body. If it has spread to the pelvic wall, it is called stage IIIb regardless of whether there is cancer in the lymph nodes.

Stage IVa: The cancer has spread to the bladder or rectum and may or may not have spread to the lymph nodes, but it has not spread to other parts of the body.

Stage IVb: The cancer has spread to other parts of the body.

Recurrent: Recurrent cancer is cancer that has come back after treatment. It may come back in the cervix or in another part of the body. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Learn more about cervical cancer staging.

Used with permission of the AJCC, Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Manual, Seventh Edition, published by Springer-Verlag New York, www.cancerstaging.org. Please note that AJCC’s Eighth Edition (2017) has been released; related changes to the information provided above are underway. Please check back soon for updated staging definitions or talk with your doctor about whether these changes affect your diagnosis.

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.

HIV and AIDS-Related Cancer - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat each of the most common types of HIV/AIDS-related cancers. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for these types 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 treatment. 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 treatments for HIV/AIDS-related cancers are listed below by general treatment and then listed by type of cancer. 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.

It is often difficult to treat cancer in people with AIDS because of the increased risk of infections from lower levels of white blood cells and poorer immune function caused by HIV. However, doctors and researchers are always looking for better treatments, and recent research has resulted in medical advances.

Learn more about making treatment decisions.

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.

Antiviral treatment

It is extremely important that all patients with HIV/AIDS and an associated cancer receive treatment with highly active antiretroviral treatment (HAART) both during the cancer treatments and afterwards. HAART can effectively control the virus in most patients. Better control of the HIV infection decreases the side effects of many of the treatments, may decrease the chance of a recurrence, and can improve a patient’s chance of recovery from the cancer.

General types of treatment for an HIV/AIDS-related cancer

In addition to antiviral treatment and caring for symptoms and side effects, the following treatments may be used.

  • Surgery. Surgery is the removal of the tumor or lesion and some surrounding healthy tissue, called a margin, during an operation. Surgery may be performed by a surgical oncologist, a doctor who specializes in treating cancer using surgery. Learn more about the basics of cancer surgery.

  • Radiation therapy. Radiation therapy is the use of 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. 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 therapy is given using implants, it is called internal radiation therapy or brachytherapy. External-beam radiation therapy may be given as a palliative treatment. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

    Side effects from radiation therapy may include fatigue, mild skin reactions, 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 usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

    The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished. Learn more about the basics of chemotherapy and preparing for treatment

  • Immunotherapy. Immunotherapy, also called biologic therapy, is designed to boost the body’s natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Learn more about the basics of immunotherapy.

  • 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 while limiting damage to healthy cells.

    Recent studies show that not all cancers have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors involved in your cancer. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted 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. Learn more about your prescriptions by using searchable drug databases.

Treatment of Kaposi Sarcoma

The treatment of HIV/AIDS-related Kaposi sarcoma usually cannot cure the cancer, but it can help relieve pain or other symptoms. This can be followed by palliative care for Kaposi sarcoma. Antiviral treatment for HIV/AIDS helps reduce a person’s chance of getting Kaposi sarcoma and can reduce the severity of Kaposi sarcoma. HAART helps treat the tumor and reduce the symptoms associated with Kaposi sarcoma for people with HIV/AIDS. It is usually used before other treatments, such as chemotherapy.

  • 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 described below. 

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

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

  • Photodynamic therapy. In photodynamic therapy, a light-sensitive substance is injected into the lesion that stays longer in cancer cells than in healthy cells. A laser is directed at the lesion to destroy the cancer cells.

  • Radiation therapy. Radiation therapy may an option for Kaposi sarcoma.

  • Chemotherapy. Sometimes, chemotherapy is injected directly into the lesion to destroy the cancer cells, called an intralesional injection. Chemotherapy may help control advanced disease, although curing HIV/AIDS-related Kaposi sarcoma with chemotherapy is extremely rare. Usually, for HIV/AIDS-related Kaposi sarcoma, chemotherapy is used to help relieve symptoms and to lengthen a patient’s life. Common drugs for Kaposi sarcoma include:

    • Liposomal doxorubicin (Doxil)

    • Paclitaxel (Taxol, LEP-ETU, Abraxane)

    • Vinorelbine (Navelbine, Alocrest).

  • Immunotherapy. Some people with HIV/AIDS-related Kaposi sarcoma may receive alpha-interferon (Roferon-A, Intron A, Alferon), which appears to work by changing the surface proteins of cancer cells and by slowing their growth. Immunotherapy is generally used for people who are in the good-risk category in the immune system (I) factor of the TIS staging system (see Stages). The most common side effects of alpha-interferon are low levels of white blood cells and flu-like symptoms.

Learn more about the treatment options for Kaposi sarcoma.

Treatment of non-Hodgkin Lymphoma

The main treatments for HIV/AIDS-related non-Hodgkin lymphoma are chemotherapy, targeted therapy, and radiation therapy.

  • Chemotherapy. Chemotherapy is the most common treatment for non-Hodgkin lymphoma. It may be given by mouth or injected into a vein. Previously, chemotherapy treatment for HIV/AIDS-related non-Hodgkin lymphoma was given at lower doses because of the person’s weakened immune system. Now, with better antiretroviral treatment, patients with HIV/AIDS-related non-Hodgkin lymphoma can usually receive the same doses of drugs given to people with lymphoma who do not have HIV.

  • Targeted therapy. For B-cell non-Hodgkin lymphoma, rituximab (Rituxan), a type of targeted therapy called a monoclonal antibody, may be used. A monoclonal antibody recognizes and attaches to a specific protein in the cancer cells and it does not affect cells that don’t have that protein. Specifically, rituximab targets B lymphocytes and is used together with chemotherapy for most patients. Talk with your doctor about possible side effects for a specific medication and how they can be managed.

  • Radiation therapy. For people with HIV/AIDS-related lymphoma, radiation therapy may be given along with chemotherapy.

Learn more about treatment options for non-Hodgkin lymphoma.

Treatment of cervical cancer

Treatments for women with the precancerous condition called CIN (see Introduction) are generally not as effective for women with HIV/AIDS because of a weakened immune system. Often, the standard treatment for HIV/AIDS can lower the symptoms of CIN.

Women with invasive cervical cancer and HIV/AIDS that is well-controlled with medication generally receive the same treatments as women who do not have HIV/AIDS. Common treatment options include surgery, radiation therapy, and chemotherapy. Learn more about cervical cancer treatment options.

Metastatic HIV/AIDS-related cancer

If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. 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 treatment plan chosen.

Your treatment plan may include a combination of the treatments discussed above. Palliative care will also be important to help relieve symptoms and side effects.

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

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’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 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 the specific 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.

HIV and AIDS-Related Cancer - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 HIV/AIDS-related cancer. 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 HIV/AIDS-related cancer. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with HIV/AIDS-related cancer.

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 HIV/AIDS-related cancers, 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.

HIV and AIDS-Related Cancer - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about HIV/AIDS-related cancers and how to treat them. To see other pages, use the menu.

Doctors are working to learn more about HIV/AIDS-related cancer, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with these diseases. 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.

  • Combination therapies. Clinical trials are underway to study the effects of chemotherapy plus substances called colony-stimulating factors that help the body make white blood cells and antiretroviral therapy. The effect of high-dose therapy with stem cell transplantation is also being tested in clinical trials.

  • New therapies. Based on advances in understanding the biology of HIV/AIDS-related Kaposi sarcoma, drugs called anti-angiogenics that block the formation of new blood vessels needed for a tumor to grow and spread, vitamin D and similar products, and a targeted therapy called imatinib (Gleevec) are being tested in clinical trials.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current cancer 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, NHL, and cervical cancer, 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.

HIV and AIDS-Related Cancer - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. 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 an HIV/AIDS-related 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 cancer. 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 and 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.

HIV and AIDS-Related Cancer - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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.

Because HIV/AIDS cannot be cured at this time, patients need continuous treatment with HAART by doctors who specialize in HIV/AIDS treatment. 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. Your specific follow-up care plan will depend on several factors, including the type of cancer.

  • Kaposi sarcoma. There is no treatment available currently to cure the disease. Therefore, patients should be monitored for symptoms throughout their life. Any symptoms should be managed with more than one treatment (see Treatment Options).

  • Non-Hodgkin lymphoma. Patients should receive the same type of follow-up care as women who do not have HIV. Learn more about what to expect after treatment for non-Hodgkin lymphoma.

  • Cervical cancer. Women diagnoses with an HIV/AIDS-related cervical cancer typically receive the same type of follow-up care as people who do not have HIV. Learn more about what to expect after treatment for cervical cancer.

Talk with your doctor about the specific care you need after treatment. 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.

HIV and AIDS-Related Cancer - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 an HIV/AIDS-related cancer 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. This 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.

HIV and AIDS-Related Cancer - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 cancer do I have?

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

  • What stage is the cancer? 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?

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

  • Who will be leading my overall treatment?

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

  • How can my HIV infection be managed during cancer treatment?

  • How will the cancer treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment plan 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 medical care, who can help me?

  • Whom should I call for questions or problems?

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

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • What type of surgery will I have?

  • How long with 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 possible long-term effects of having this surgery?

Questions to ask about having chemotherapy, immunotherapy, or targeted therapy

  • What medications or treatment is recommended?

  • What is the goal of this treatment?

  • How do I prepare for 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 having radiation therapy

  • What kind of radiation therapy will I receive?

  • What is the goal of this treatment?

  • How often will I receive this treatment?

  • How do I prepare for 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.  

HIV and AIDS-Related Cancer - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 01/2016

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 HIV/AIDS-Related Cancer. 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 HIV/AIDS-Related Cancer. Use the menu to select another section to continue reading this guide.