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HIV/AIDS-Related Cancer - Introduction

Approved by the Cancer.Net Editorial Board, 07/2017

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. Use the menu to see other pages. Think of that menu as a roadmap for this complete 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 an increased risk of developing the following cancers:

  • Kaposi sarcoma

  • Non-Hodgkin lymphoma

  • Cervical cancer

For people with HIV, these 3 cancers are often called “AIDS-defining conditions.” This means that if a person with an HIV infection has 1 of these cancers, it can mean that AIDS has developed.

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 soft-tissue sarcoma 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 often found 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 also called epidemic Kaposi sarcoma.

HIV/AIDS-related Kaposi sarcoma causes lesions to arise in more than 1 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; the tonsils, located in the throat; and bone marrow, the spongy red tissue inside bones that makes blood cells and platelets..

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

  • Primary central nervous system lymphoma, which affects the brain

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

  • Aggressive B-cell lymphomas, most commonly the diffuse large B-cell or Burkitt subtypes

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:

The rest of this guide focuses on Kaposi sarcoma, NHL, and cervical cancer in people with HIV/AIDS.

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 other sections on Cancer.Net:

  • ASCO Answers Fact Sheets: Read 1-page fact sheets that offer an introduction to these types of cancer. These fact sheets are available as PDFs, so they are easy to print out.

  • Cancer.Net Blog: Read a blog post about things people living with HIV should know about cancer.

  • Cancer.Net Patient Education Videos: View short videos led by ASCO experts in these types of cancer that provide basic information and areas of research.

The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with an HIV/AIDS-related cancer and general survival rates. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Statistics

Approved by the Cancer.Net Editorial Board, 07/2017

ON THIS PAGE: You will find information about the number of people who are diagnosed with an HIV/AIDS-related cancer each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

As HIV treatment has improved, Kaposi sarcoma rates have decreased, with about 6 new people diagnosed each year for every 1 million people in the United States. Men are nearly 10 times more likely than women to be diagnosed with the disease. Kaposi sarcoma is most common among black and Hispanic people in the United States. Children are rarely diagnosed with the disease.

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 shows 5-year survival rates of approximately 74% for people with both HIV and Kaposi sarcoma, and this is probably an underestimate.

As with Kaposi sarcoma, improved HIV treatment regimens have also decreased the rates of NHL. About 50% of HIV-associated NHL cases occur in people who already have been diagnosed with AIDS, with the remaining people being diagnosed with NHL and AIDS at the same time.

For people with NHL and HIV/AIDS, the chance of recovery depends on several 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 the survival rates for people with an HIV/AIDS-related cancer are an estimate. The estimate comes from annual data based on the number of people with these types of cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2017: Special Section – Rare Cancers in Adults, the ACS website, and the National Cancer Institute (January 2019).

The next section in this guide is Risk Factors and Prevention. It explains what factors may increase the chance of developing HIV/AIDS-related cancer. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Risk Factors and Prevention

Approved by the Cancer.Net Editorial Board, 07/2017

ON THIS PAGE: You will find out more about the factors that increase the chance of developing an HIV/AIDS-related cancer. 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 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 an 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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 07/2017

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 an HIV/AIDS-related cancer may experience the following symptoms or signs. Sometimes, people with an HIV/AIDS-related cancer do not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not cancer.

Kaposi sarcoma

  • Slightly elevated purple, pink, brown, or red blotches or bumps in the mouth and/or throat or anywhere on the skin, most commonly on the upper body and face.

  • Lymphedema, which is swelling caused by blockage of the lymphatic system, often in an arm or leg

  • Unexplained cough or chest pain

  • Unexplained stomach or intestinal pain

  • Diarrhea and/or blockage of the digestive tract, caused by Kaposi sarcoma lesions that have developed in the gastrointestinal system

Non-Hodgkin lymphoma

The symptoms of NHL depend on where the cancer began and the organ that is involved.

General symptoms:

  • Enlarged lymph nodes in the abdomen, groin, neck, or underarms

  • Enlarged spleen or liver

  • Fever that cannot be explained by an infection or other illness

  • Weight loss with no known cause

  • Sweating and chills

  • Fatigue

Examples of symptoms related to tumor location:

  • A tumor in the abdomen can cause a stretched belly or pain in the back or abdomen.

  • A tumor in the center of the chest can press on the windpipe and cause coughing, chest pain, difficulty breathing, or other respiratory problems.

  • Bloody spots or light bleeding between or following menstrual periods

Cervical cancer

  • Menstrual bleeding that is longer and heavier than usual

  • Bleeding after sexual intercourse, douching, or a pelvic examination

  • Pain during sexual intercourse

  • Bleeding after menopause

  • Increased vaginal discharge

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. This may also be called symptom management, palliative care, or supportive care. 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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Diagnosis

Approved by the Cancer.Net Editorial Board, 07/2017

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 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. Not all tests listed below 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 to 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 combines these images into a detailed, cross-sectional view 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 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.

  • 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.

  • 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.

Kaposi sarcoma

  • 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. Patients are given mild anesthesia during a bronchoscopy. Anesthesia is medication to block the awareness of pain.

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

    • Positron emission tomography (PET) or PET-CT 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. A nuclear medicine physician interprets the scan.

Non-Hodgkin lymphoma

A doctor can use this technique to look at both the structure and how much energy is used by the tumor and healthy tissues. If, after having 1 or more imaging tests, the doctor decides the lymphoma might be affecting the bone marrow, he or she may recommend a bone marrow biopsy.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill to swallow. A radiologist interprets the scan. 

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and typically done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small core of solid tissue using a needle.

    A pathologist or hematopathologist then analyzes the sample(s). A hematopathologist is a pathologist with specialized training in lymphoma, leukemia, and other blood cancers. 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 numbed with medication beforehand. The patient may also receive other types of anesthesia to block the awareness of pain.

    Lymphoma often spreads to the bone marrow, so looking at a sample of the bone marrow can be important for diagnosing lymphoma and determining the stage. The doctor can also use the sample removed during the aspiration to find any chromosome changes.

  • Lumbar puncture, also called a “spinal tap.” Some aggressive lymphomas, especially Burkitt lymphoma, carry a risk of entering the spinal fluid surrounding the brain and spinal cord or going to the brain tissue itself.  As a result, a diagnostic lumbar puncture or brain imaging, usually an MRI, may be used in the initial staging. Chemotherapy may be used to treat or prevent central nervous system involvement.

  • Molecular testing of the tumor. Your doctor may recommend running laboratory tests on a tumor sample and/or bone marrow sample to identify specific genes, proteins, and other factors unique to the disease. Results of these tests will help decide whether your treatment options include a type of treatment called targeted therapy (see Treatment Options). There are different types of molecular and genetic testing:

    • Cytogenetics studies healthy and abnormal chromosomes in dividing cancer cells.

    • Fluorescent in situ hybridization (FISH) uses fluorescent probes under a special microscope to detect changes in specific chromosomes.

    • Flow cytometry looks at proteins that are on the surface or inside a cancer cell.

    • Polymerase chain reaction (PCR) detects specific DNA sequences that occur in some cancers.

    • Extended molecular profiling is used to broadly review tumor markers or to detect trace amounts of remaining cancer after treatment finishes. Although this is still being studied, it may become more commonly used in the near future.

Cervical cancer

  • Pap test. A Pap test is when the doctor gently scrapes the outside of the cervix and vagina, taking samples of the cells for testing.

    Improved Pap test methods have made it easier for doctors to find cancerous cells. Traditional Pap tests can be hard to read because cells can be dried out, covered with mucus or blood, or clump together on the slide.

  • The liquid-based cytology test (often referred to as ThinPrep or SurePath) transfers a thin layer of cells onto a slide after removing blood or mucus from the sample. Because the sample is preserved, other tests can be done at the same time.

  • Computer screening (often called AutoPap or Focal Point) uses a computer to scan the sample for abnormal cells.

  • Pelvic examination. In this examination, the doctor feels a woman’s uterus, vagina, ovaries, fallopian tubes, cervix, bladder, and rectum to check for any unusual changes. A Pap test is often done at the same time.

  • HPV typing. An HPV test is similar to a Pap test, where the test is done on a sample of cells from the patient’s cervix. The doctor may test for HPV at the same time as a Pap test or after Pap test results show abnormal changes to the cervix. Certain strains of HPV, such as HPV-16 and HPV-18, are seen more often in women with cervical cancer and may help confirm a diagnosis. If the doctor says the HPV test is “positive,” that means it found the presence of HPV. Many women have HPV but do not have cervical cancer, so HPV testing alone is not an accurate test for cervical cancer.

If the Pap test showed some abnormal cells and the HPV test is also positive, the doctor may suggest 1 or more of the following diagnostic tests: colposcopy, pelvic examination, x-ray, MRI, PET-CT scan, cystoscopy, proctoscopy, and/or laparoscopy. For details about diagnostic tests, visit the Cervical Cancer section.

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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Stages

Approved by the Cancer.Net Editorial Board, 07/2017

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.

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.

However, in 1988 the AIDS Clinical Trials Group (ACTG) developed a staging system called the TIS system. The ACTG is the largest HIV clinical trials organization in the world and is funded by the National Institutes of Health.

The TIS system evaluates:

  • Tumor (T): The size of the tumor.

  • 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.

  • Systemic illness (S): The spread of the disease throughout the body or the presence of HIV/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)
 

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

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 of these conditions applies:

  • 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 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 1 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-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-IV lymphomas are common and are is still very treatable. Stage III-IV is now considered 1 category because they have the same treatment and prognosis.

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 follows the same system used for women with cervical cancer who do not have HIV. For cervical cancer, the staging system developed by the International Federation of Obstetrics and Gynecology (Federation Internationale de Gynecologie et d'Obstetrique or FIGO) is used.

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. This stage may be described in more detail (see below).

  • Stage IA: The cancer is diagnosed only by microscopy, which is viewing cervical tissue or cells under a microscope. No lymph nodes are involved, and there is no distant spread.
  • Stage IA1: There is a cancerous area of 3 millimeters (mm) or smaller in depth and 7 mm or smaller in length. No lymph nodes are involved, and there is no distant spread.
  • Stage IA2: There is a cancerous area larger than 3 mm but not larger than 5 mm in depth and 7 mm or smaller in length. No lymph nodes are involved, and there is no distant spread.
  • Stage IB: In this stage, the doctor can see the lesion, and the cancer is found only in the cervix. Or there is a lesion that can be seen using a microscope, and it is larger than a IA2 tumor (see above). The cancer may have been found through a physical examination, laparoscopy, or other imaging method (see Diagnosis). No lymph nodes are involved, and there is no distant spread.
  • Stage IB1: The tumor is 4 centimeters (cm) or smaller. No lymph nodes are involved, and there is no distant spread.
  • Stage IB2: The tumor is larger than 4 cm. No lymph nodes are involved, and there is no distant spread.

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. This stage may be described in more detail (see below).

  • Stage IIA: The tumor has not spread to the tissue next to the cervix, also called the parametrial area. No lymph nodes are involved, and there is no distant spread.
  • Stage IIA1: The tumor is 4 cm or smaller. No lymph nodes are involved, and there is no distant spread.
  • Stage IIA2: The tumor is larger than 4 cm. No lymph nodes are involved, and there is no distant spread.
  • Stage IIB: The tumor has spread to the parametrial area. No lymph nodes are involved, and there is no distant spread.

Stage III: The tumor has spread to the pelvic wall, and/or involves the lower third of the vagina, and/or causes swelling of the kidney, called hydronephrosis, or stops a kidney from functioning. No lymph nodes are involved, and there is no distant spread.

  • Stage IIIA: The tumor involves the lower third of the vagina, but it has not grown into the pelvic wall. No lymph nodes are involved, and there is no distant spread.

  • Stage IIIB: The tumor has grown into the pelvic wall and/or affects the kidneys, but it has not spread to the lymph nodes or distant sites. Or, the cancer has spread to lymph nodes in the pelvis, but not distant sites, and the tumor can be any size.

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.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Treatment Options

Approved by the Cancer.Net Editorial Board, 07/2017

ON THIS PAGE: You will learn about the different treatments doctors use for people with the most common types of HIV/AIDS-related cancers. Use the menu to see other pages.

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 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 whether the 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. 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 include a variety of other health care professionals, such as 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. Talk with your doctor about the goals of each treatment 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 treatments intended 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 at the same time that they receive treatment to ease side effects. In fact, patients who receive both at the same time 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. 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.

Antiretroviral treatment

It is extremely important that all patients with HIV/AIDS and an associated cancer receive highly active antiretroviral treatment (ART) both during the cancer treatments and afterward. ART 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 antiretroviral treatment and caring for symptoms and side effects, the following treatments may be used.

  • Chemotherapy. Chemotherapy is the use of drugs to destroy cancer cells, usually by ending 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, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs given 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 after 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. Different types of immunotherapy can cause different side effects. Talk with your doctor about possible side effects for the immunotherapy recommended for you. 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 treatments.

  • 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. External-beam radiation therapy may be given as a palliative treatment. When radiation therapy 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.

    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.

  • 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. 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.

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

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

  • Surgery. Surgery is most useful when the lesions are located in a single area or a few specific areas. The 2 types of surgical procedures used for Kaposi sarcoma are: 

    • Curettage and electrodesiccation. In 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. 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 1 freezing may be needed.

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

  • 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)

    • Vinorelbine (Alocrest, Navelbine).

  • Immunotherapy. Some people with HIV/AIDS-related Kaposi sarcoma may receive alpha-interferon (Roferon-A, Intron A, Alferon), which appears to work by changing proteins on the surface of the 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) may be used. Rituximab is a type of targeted therapy called a monoclonal antibody. 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. Rituximab targets a molecule called CD20 that is located on the surface of B cells. It is used together with chemotherapy for most patients. Two other anti-CD20 monoclonal antibodies may also be used, obinutuzumab (Gazyva) or ofatumumab (Arzerra). 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 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 chosen treatment plan.

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 new cycle of testing will begin again to learn as much as possible about the recurrence. After this 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 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 doesn’t 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 many people, advanced cancer is difficult to discuss. 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 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.

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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - About Clinical Trials

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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. Use the menu to see other pages.

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 are some risks with a clinical trial, including possible side effects and 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. 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 a way to contribute to the 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.

Insurance coverage of clinical trials costs differs by location and by study. In some programs, some of the patient’s 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. 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:

  • Describe all of the patient’s options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • 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.

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.

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.

PRE-ACT, Preparatory Education About Clinical Trials

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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Latest Research

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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. Use the menu to see other pages.

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 best diagnostic and treatment options for you.

  • Combination therapies. Clinical trials are underway to study the effects of chemotherapy plus targeted agents, and the role of antiretroviral therapy given at the same time. The effect of high-dose therapy with bone marrow transplantation as well as chimeric antigen receptor T-cell (CAR-T) therapy are also being tested in clinical trials.

  • New therapies. There have been advances in the understanding of the biology of HIV/AIDS-related Kaposi sarcoma. New targeted therapies called kinase inhibitors block angiogenesis, which is the formation of new blood vessels that a tumor needs to grow and spread. In addition, a targeted therapy called imatinib (Gleevec) is 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:

  • Visit the website of the Conquer Cancer Foundation to find out how to help support cancer research. Please note that this link takes you to a separate ASCO website. 

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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Coping with Treatment

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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. 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 don’t 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. 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 in 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 sadness, 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 response.

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. 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.

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. It explains the importance of checkups after cancer treatment is finished. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Follow-Up Care

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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 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, patients need continuous treatment with ART 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 currently available to cure the disease. Therefore, patients should be monitored for symptoms throughout their life. Any symptoms should be managed with more than 1 treatment (see Treatment Options).

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

  • Cervical cancer. Women diagnosed 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 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 originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

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. 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 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 create a treatment summary to 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 decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the 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 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. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Survivorship

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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” 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 about coping with everyday life.

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, 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

  • 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 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.

It is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may 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 that 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 those in different age groups.

The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. You may use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Questions to Ask the Health Care Team

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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. Use the menu to see other pages.

Talking often with your 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.

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?

  • What are my treatment options?

Questions to ask about choosing a treatment and managing side effects

  • 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 with questions or problems?

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

  • Is there anything else I should be asking?

  • What type of surgery will I have?

Questions to ask about having surgery

  • 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?

  • What medications or treatment is recommended?

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

  • 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?

  • What kind of radiation therapy will I receive?

Questions to ask about having radiation therapy

  • 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?

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

Questions to ask about planning follow-up care

  • 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. You may use the menu to choose a different section to read in this guide.  

HIV/AIDS-Related Cancer - Additional Resources

Approved by the Cancer.Net Editorial Board, 07/2017

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. 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.

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.