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HIV/AIDS-Related Cancer - Introduction

Approved by the Cancer.Net Editorial Board, 11/2022

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 entire 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 (NHL)

  • 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 most commonly found in people 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 small, 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:

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

  • 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

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

Cervical cancer

Cervical cancer starts in the cervix, which is 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.

People with HIV/AIDS have a higher risk of developing abnormal cells in the cervix that can become cancer. This is called cervical dysplasia. 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:

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. 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, 02/2023

ON THIS PAGE: You will find links to other parts of this website for information about the estimated number of people who will be diagnosed with a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with an HIV/AIDS-related cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided below, as well as at the bottom of the individual pages in each specific guide to that cancer.

HIV/AIDS-related cancers are uncommon. Because of this, there are not specific statistics available for cancers related to HIV/AIDS. However, people with HIV infection have a higher risk of developing cancer than people without HIV infection. In the most recent estimate from the National Cancer Institute (from 2017), they are 500 times more likely to be diagnosed with Kaposi sarcoma, 12 times more likely to be diagnosed with non-Hodgkin lymphoma, and 3 times more likely to be diagnosed with cervical cancer. People with HIV infection also have a higher risk of dying from cancer than people with the same cancers but without HIV infection.

To learn more about the general statistics for a specific HIV/AIDS-defining condition, visit the sections on this same website on:

Statistics adapted from the website of the National Cancer Institute. (Source accessed February 2023.)

The next section in this guide is Risk Factors and Prevention. It describes the factors that may increase the chance of developing an 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, 11/2022

ON THIS PAGE: You will find out more about the factors that increase the chance of developing a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). Use the menu to see other pages.

What are the risk factors for HIV/AIDS-related cancers?

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, including 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. HPV vaccines can prevent people from developing certain cancers. Learn more about HPV and cancer.

  • 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.

Are there ways to prevent HIV/AIDS-related cancers?

Different factors cause different types of cancer. Researchers continue to look into what factors cause HIV/AIDS-related cancers, including ways to prevent them. Although there is no proven way to completely prevent an HIV/AIDS-related cancer, you may be able to lower your risk. The most effective way to reduce the risk of cancer is to take antiretroviral medication as it is prescribed (see Types of Treatment). Talk with your health care team for more information about your personal risk of cancer.

Learn more about cancer prevention and healthy living.

The next section in this guide is Symptoms and Signs. It explains what changes or medical problems an HIV/AIDS-related cancer can cause. 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, 11/2022

ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). Use the menu to see other pages.

What are the symptoms and signs of an HIV/AIDS-related cancer?

People with a cancer related to HIV/AIDS may experience one or more of the following symptoms or signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, people with an HIV/AIDS-related cancer do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be a medical condition that is not cancer.

Kaposi sarcoma

  • Slightly elevated purple, pink, brown, black, blue, or red blotches or bumps anywhere on the skin or in the mouth and/or throat

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

  • Unexplained cough or chest pain

  • Unexplained stomach or intestinal pain

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

Non-Hodgkin lymphoma

The symptoms of non-Hodgkin lymphoma (NHL) depend on where the cancer began and the organ that is involved. Here are some 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

Cervical cancer

Any of the following could be symptoms or signs of cervical cancer:

  • Blood spots or light bleeding between or following periods

  • Menstrual bleeding that is longer and heavier than usual

  • Bleeding after intercourse, douching, or a pelvic examination

  • Increased vaginal discharge

  • Pain during sexual intercourse

  • Bleeding after menopause

  • Unexplained, persistent pelvic and/or back pain

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will try to understand what is causing your symptom(s). They may do an exam and order tests to understand the cause of the problem, which is called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. Managing symptoms may also be called palliative and supportive care,” which is not the same as hospice care given at the end of life. This type of care focuses on managing symptoms and supporting people who face serious illnesses, such as cancer. You can receive palliative and supportive care at any time during cancer treatment. Learn more in this guide’s section on Coping With Treatment.

Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Diagnosis

Approved by the Cancer.Net Editorial Board, 11/2022

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

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

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

How HIV/AIDS-related cancer is diagnosed

There are different tests used for diagnosing a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). Not all tests described here 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 general health

  • 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 only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During biopsy, a small amount of tissue is removed for examination under a microscope. A pathologist 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 takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye 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 creates a picture of the structures inside of the body, using a small amount of radiation.

  • Endoscopy. An endoscopy shows the inside of the body using 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 so the patient becomes 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. Similar to an endoscopy, the doctor passes a thin, flexible tube with a light on the end into the mouth or nose, down through the windpipe, and into the breathing passages of the lungs. This procedure may be performed by a surgeon or a pulmonologist. A pulmonologist is a medical doctor who specializes in lung diseases. The tube lets the doctor see inside the lungs. Tiny tools inside the tube can gather samples of fluid and tissue and remove them for examination by a pathologist. Patients are given mild anesthesia during a bronchoscopy. Anesthesia is medication to block the awareness of pain.

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

Non-Hodgkin lymphoma

  • Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. 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.

  • Positron emission tomography (PET) or PET-CT scan. A PET scan creates pictures of organs and tissues inside the body. 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 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. However, the amount of radiation in the substance is too low to be harmful. A scanner then detects this substance to produce images of the inside of the body. A nuclear medicine physician interprets the scan.

    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, they may recommend a bone marrow biopsy.

  • Bone marrow aspiration and biopsy. These 2 procedures are done 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. These procedures are often done at the same time and may be called a bone marrow examination.

    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. Doctors generally give a type of medication called anesthesia beforehand to numb the area. Anesthesia is medication that blocks the awareness of pain. Stronger types of anesthesia can also be used to lessen the pain. 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 genetic changes. With certain types of lymphoma, these procedures may not be required if a PET scan has been done.

  • Biomarker testing of the tumor.Your doctor may recommend running laboratory tests on a tumor and/or bone marrow sample to identify specific genes, proteins, and other factors unique to the disease. This may also be called molecular testing. Results of these tests can help determine your treatment options. There are several types of molecular and genetic testing:

    • Cytogenetics detects cancer-specific changes in the number and/or structure of chromosomes.

    • Fluorescent in situ hybridization (FISH) uses fluorescent probes under a special microscope to find cancer-specific chromosome changes that may not be seen by cytogenetics.

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

    • Immunohistochemistry (IHC) is a special staining process to look at proteins on the surface of or inside the cancer cell.

    • Polymerase chain reaction (PCR)-based tests find cancer-specific DNA changes.

    • Molecular profiling/gene sequencing finds cancer-specific changes in the DNA sequence of genes in the cancer cells. Recent advances in sequencing technology, often called next-generation sequencing or NGS, allow testing of many genes from a single sample.

Cervical cancer

  • Bimanual pelvic examination and sterile speculum examination. In this gynecologic examination, the doctor will check for any unusual changes in the patient's cervix, uterus, vagina, ovaries, and other nearby organs. To start, the doctor will look for any changes to the vulva outside the body and then, using an instrument called a speculum to keep the vaginal walls open, the doctor will look inside the vagina to visualize the cervix. A Pap test is often done at the same time. Some of the nearby organs are not visible during this exam, so the doctor will insert 2 fingers of 1 hand inside the vagina while the other hand gently presses on the lower abdomen to feel the uterus and ovaries. This exam typically takes a few minutes and is done in an examination room at the doctor’s office.

  • Pap test. During a Pap test, the doctor gently scrapes the outside and inside of the cervix, taking samples of 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 may 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. The sample is preserved so other tests can be done at the same time, such as the human papillomavirus (HPV) test.

    • Computer screening, often called AutoPap or FocalPoint, uses a computer to scan the sample for abnormal cells.

  • HPV typing test. An HPV test is similar to a Pap test. The test is done on a sample of cells from the 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 types or strains of HPV, such as HPV16 and HPV18, are called high-risk HPV. These strains are seen more often in people with cervical cancer and may help confirm a diagnosis. If the doctor says the HPV test is “positive,” this means the test found the presence of high-risk HPV. Many people have HPV but do not have cervical cancer, so HPV testing alone is not enough for a diagnosis of cervical cancer and other testing will be needed. If a person with a positive HPV test does not show signs of cervical cancer with further testing, the American Society of Clinical Oncology (ASCO) recommends that they receive a follow-up HPV test 1 year later.

  • Colposcopy. The doctor may do a colposcopy to check the cervix for abnormal areas. A colposcopy can also be used to help guide a biopsy of the cervix (see below). During a colposcopy, a special instrument called a colposcope is used. The colposcope magnifies the cells of the cervix and vagina, similar to a microscope. It gives the doctor a lighted, magnified view of the tissues of the vagina and the cervix. The colposcope is not inserted into the body, and the examination is similar to a speculum examination. It can be done in the doctor's office and has no side effects. This test can be done during pregnancy. ASCO recommends that people who receive an abnormal or positive result from cervical cancer screening tests receive a colposcopy.

After diagnostic tests are done, your doctor will review 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. 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, 11/2022

ON THIS PAGE: You will learn about how doctors describe the growth or spread of a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). This is called the stage. Use the menu to see other pages.

READ MORE BELOW:

What is cancer staging?

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment, and it can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancers.

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Kaposi sarcoma

For epidemic Kaposi sarcoma, there is no official staging system. However, in 1988 the AIDS Clinical Trials Group (ACTG) developed a staging system called the TIS system. The ACTG is the largest HIV clinical trials organization in the world and is funded by the U.S. National Institutes of Health. The treatment of HIV has changed a lot since 1988. Therefore, it is unclear if the TIS system is still clinically useful.

The TIS system evaluates:

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

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

Extensive oral Kaposi sarcoma

Gastrointestinal Kaposi sarcoma

Kaposi sarcoma in other organs in the body

Immune system (I)

CD4 cell count is 200 or more cells per cubic millimeter

CD4 cell count is less than 200 cells per cubic millimeter

Systemic illness (S)

No systemic illness present

No “B” symptoms, which include unexplained fever, night sweats, greater than 10% involuntary weight loss, or diarrhea for more than 2 weeks

A Karnofsky Performance Status score of 70 or higher

History of systemic illness and/or thrush

One or more “B” symptoms are present

A Karnofsky performance status of less than 70

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

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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 NHL in people who do not have HIV/AIDS.

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, still very treatable, and often curable, depending on the lymphoma subtype. Stage III and stage IV are now considered a single category because they have the same treatment and prognosis.

Progressive/refractory: If the cancer grows larger or spreads while the patient is being treated for the original lymphoma, it is called progressive disease. This is also called refractory NHL.

Recurrent/relapsed: 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 there is a recurrence, the cancer may need to be staged again (called re-staging) using the system above. This is also called relapsed NHL.

Aggressive lymphomas are also evaluated based on the International Prognostic Index and functional status. Learn more about staging for NHL.

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Cervical cancer

The staging of HIV/AIDS-related cervical cancer follows the same system used for people 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.

Doctors assign the stage of the cancer by evaluating the tumor and whether the cancer has spread to other parts of the body.

Staging is based on a the results of a physical exam, imaging scans, and biopsies.

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 other parts of the body. This stage may be divided into smaller groups to describe the cancer in more detail.

Stage II: The cancer has spread beyond the uterus to nearby areas, such as the vagina or tissue near the cervix, but it is still inside the pelvic area. The cancer has not spread to other parts of the body. This stage may be divided into smaller groups to describe the cancer in more detail.

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

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

Learn more about cervical cancer staging.

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

HIV/AIDS-Related Cancer - Types of Treatment

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with the most common types of cancers related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). Use the menu to see other pages.

This section explains the types of treatments, also called therapies, that are the standard of care for HIV/AIDS-related cancers. “Standard of care” means the best treatments known. Information in this section is based on medical standards of care for cancers related to HIV/AIDS in the United States. Treatment options can vary from one place to another.

When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials offer additional options to consider. A clinical trial is a research study that tests a new approach to treatment. Doctors learn through clinical trials whether a new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.

How HIV/AIDS-related cancer is treated

In cancer care, different types of doctors who specialize in cancer, called oncologists, 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 other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, physical therapists, occupational therapists, and others. Learn more about the clinicians who provide cancer care.

Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision-making is important for HIV/AIDS-related cancer because there are different treatment options.

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 lowered 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.

The common types of treatments used for HIV/AIDS-related cancers are described below by general treatment and then listed by type of cancer. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care.

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Physical, emotional, social, and financial effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative and supportive care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments, such as chemotherapy, surgery, or radiation therapy, to improve symptoms.

Before treatment begins, talk with your doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns.

During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.

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Antiretroviral treatment (ART)

It is extremely important that everyone with HIV/AIDS and an associated cancer receive highly active antiretroviral treatment (ART) both during the cancer treatments and afterward. ART can effectively control HIV in most patients. Better control of the HIV decreases the side effects of many of the cancer treatments, may decrease the chance of a cancer recurrence, and can improve a person's chance of recovery from the cancer.

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

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

Therapies using medication

The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.

This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications to take at home, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for HIV/AIDS-related cancer include:

  • Chemotherapy

  • Immunotherapy

  • Targeted therapy

Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications.

It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your prescriptions by using searchable drug databases.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination 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.

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Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells.

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and weight changes. Talk with your doctor about possible side effects for the immunotherapy recommended for you. Learn more about the basics of immunotherapy.

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Targeted therapy

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.

Not all 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, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

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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.

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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.

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Treatment of Kaposi sarcoma

For patients with epidemic Kaposi sarcoma, antiretroviral treatment (ART, see above) 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 cancer medication, 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.

Specific treatments can include the following:

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

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

  • Radiation therapy

  • Chemotherapy. Chemotherapy is sometimes 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 (available as a generic drug), and vinorelbine (available as a generic drug).

  • Targeted therapy. Targeted therapy for Kaposi sarcoma includes kinase inhibitors and immune-modulating drugs, such as pomalidomide (Pomalyst).

  • Topical medications. Skin creams to shrink or stop the growth of lesions may be recommended. Topical creams often do not stop all the cancer, but they can improve a person's appearance. Imiquimod (Aldara) cream is used to treat many skin conditions, including basal cell carcinoma and Kaposi sarcoma. Alitretinoin (Panretin) is a gel medication that is related to vitamin A that can make lesions from Kaposi sarcoma go away. The gel is put on the lesions for many weeks.

  • Immunotherapy. Some people with HIV/AIDS-related Kaposi sarcoma may receive alpha-interferon (Intron A), which appears to work by changing proteins on the surface of the cancer cells and by slowing their growth.

Learn more about the types of treatments for Kaposi sarcoma.

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Treatment of non-Hodgkin lymphoma

The main treatments for HIV/AIDS-related NHL are chemotherapy, targeted therapy, immunotherapy, and radiation therapy.

  • Chemotherapy. Chemotherapy is the most common treatment for NHL. Previously, chemotherapy for HIV/AIDS-related NHL was given at lower doses because of the person’s weakened immune system. Now, with better ART, people with HIV/AIDS-related NHL can usually receive the same doses of drugs given to people with lymphoma who do not have HIV.

  • Immunotherapy. A type of immunotherapy, called chimeric antigen receptor (CAR) T-cell therapy, may be recommended. However, there is little known about how CAR T-cell therapy works in treating HIV/AIDS-related lymphoma.

  • Targeted therapy. Recommended targeted therapies may include monoclonal antibodies, such as rituximab (Rituxan), obinutuzumab (Gazyva), ofatumumab (Arzerra), and rituximab-abbs (Truxima). Other types of targeted therapies include inhibitors of BCL2, Bruton's tyrosine kinase (BTK), PI3 kinase, and other components of the B-cell receptor pathway. It is important to make sure that a targeted therapy will not interact with treatments for HIV or other medications because this could lead to less effective treatment or potential side effects.

  • Radiation therapy

Learn more about treatment options for NHL.

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Treatment of cervical cancer

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

Patients with invasive cervical cancer and HIV/AIDS that is well controlled with medication generally receive the same treatments as those who do not have HIV/AIDS. Common treatment options include:

  • Surgery. For cancer that has not spread beyond the cervix, these procedures may be recommended: conization, loop electrosurgical excision procedure (LEEP), hysterectomy, bilateral salpingo-oophorectomy, radical trachelectomy, and exenteration.

  • Radiation therapy

  • Chemotherapy

  • Targeted therapy. Cervical cancer that is metastatic or has come back after treatment may be treated with bevacizumab (Avastin) or tisotumab vedotin (HuMax-TF).

  • Immunotherapy. If cervical cancer is metastatic or has come back after treatment, pembrolizumab (Keytruda) may be offered.

Learn more about cervical cancer treatment options.

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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. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

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

For many people, a diagnosis of metastatic cancer is very stressful and difficult to bear. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of your health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.

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Remission and the chance of recurrence

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

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

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

If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, 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 and supportive care will be important for relieving symptoms and side effects.

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

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If treatment does not work

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

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

Planning for your future care and putting your wishes in writing is important, especially at this stage of disease. Then, your health care team and loved ones will know what you want, even if you are unable to make these decisions. Learn more about putting your health care wishes in writing.

People who have advanced cancer and who are expected to live less than 6 months may want to consider hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to talk with your doctor or a member of your palliative care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Learn more about advanced cancer care planning.

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

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

HIV/AIDS-Related Cancer - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for people with cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types and stages of HIV/AIDS-related cancers. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

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

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating HIV/AIDS-related cancer. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with HIV/AIDS-related cancer.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When used, placebos are usually combined with standard treatment in most cancer clinical trials. Study participants will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment 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 person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

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

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for HIV/AIDS-related cancers, learn more in the Latest Research section.

Cancer.Net offers more information about cancer clinical trials in other areas of the website, including a complete section on clinical trials.

There are many resources and services to help you search for clinical trials for HIV/AIDS-related cancer, including the following services. Please note that these links will take you to separate, independent websites:

  • ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.

  • World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.

Read more about the basics of clinical trials matching services.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for HIV/AIDS-related cancer. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Latest Research

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will read about the scientific research being done to learn more about cancers related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) 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 therapy, and the role of antiretroviral treatment (ART) given at the same time. High-dose therapy with bone marrow transplantation as well as chimeric antigen receptor T-cell (CAR-T) therapy are also being studied in clinical trials for NHL.

  • 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.

  • HPV prevention. The HPV vaccine helps prevent infection from the HPV strains that can cause specific types of cancer, including cervical cancer.

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

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in Kaposi sarcoma, non-Hodgkin lymphoma, 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 on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. Use the menu to see other pages.

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

READ MORE BELOW:

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

Coping with physical side effects

Common physical side effects from each treatment option for a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) are described in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.

You may find it helpful to keep track of your side effects, so it is easier to talk about any changes with your health care team. Learn more about why tracking side effects is helpful.

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

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Coping with emotional and social effects

You can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, fear, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

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Coping with the costs of cancer care

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

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Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, adults older than 65, and people who live in rural areas or other underserved communities.

If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people.

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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 likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should I call about side effects?

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

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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. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.

Caregivers may have a range of responsibilities on a daily or as-needed basis, including:

  • Providing support and encouragement

  • Talking with the health care team

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to and from appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish.

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Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, diarrhea, rash, and immunotherapy side effects that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

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The next section in this guide is Follow-up Care. It explains the importance of checkups after cancer treatment is finished. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 11/2022

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 a cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.

Because HIV/AIDS cannot be cured, patients need continuous treatment with antiretroviral treatment (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 from cancer 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 Kaposi sarcoma. Therefore, patients should be monitored for symptoms throughout their life. Any symptoms should be managed with more than 1 treatment (see Types of Treatment).

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

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

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

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

Managing long-term and late side effects

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

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

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.

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

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

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Survivorship

Approved by the Cancer.Net Editorial Board, 11/2022

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

What is survivorship?

The word “survivorship” is complicated because it means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person’s life.

For some, the term “survivorship” itself does not feel right, and they may prefer to use different language to describe and define their experience. Sometimes long-term treatment will be used for months or years to manage or control cancer. Living with cancer indefinitely is not easy, and the health care team can help you manage the challenges that come with it. Everyone has to find their own path to name and navigate the changes and challenges that are the results of their cancer diagnosis and treatment.

Survivors may experience a mixture of feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life. Feelings of fear and anxiety may still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.

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

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

  • 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.

A new perspective on your health

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

People recovering from cancer related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

It is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health.

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

Changing role of caregivers

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

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

Looking for More Survivorship Resources?

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

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. This free booklet is available as a PDF, so it is easy to print.

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children, teens and young adults, and people over age 65. There is also a main section on survivorship for people of all ages.

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

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

Approved by the Cancer.Net Editorial Board, 11/2022

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

Talking often with 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. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a cancer 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 cancer treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for HIV/AIDS-related cancers in clinical trials? Do clinical trials offer additional treatment options for me?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

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

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

  • Who will be leading my overall treatment?

  • How will 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?

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

  • If I have questions or problems, who should I call?

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?

  • Who should I contact about any side effects I experience? And how soon?

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

  • What can be done to prevent or relieve the side effects?

Questions to ask about having therapies using medication

  • What medication 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?

  • Will I receive this treatment at a hospital or clinic? Or will I take it at home?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

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

  • What can be done to prevent or 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?

  • Who should I contact about any side effects I experience? And how soon?

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

  • What can be done to prevent or 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 those tests be needed?

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

  • When should I return to my primary care doctor for regular medical care?

  • Who will be leading my follow-up care?

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

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

HIV/AIDS-Related Cancer - Additional Resources

Approved by the Cancer.Net Editorial Board, 11/2022

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.

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.