Frequently Asked Questions

What is HPV?

HPV (Human Papillomavirus) is the name of a group of sexually transmitted viruses that includes more than 80 different strains or types. HPV is one of the most common STDs in the world. HPV is the cause of warts which usually appear in the groin area. HPV strains 16 and 18 are more likely to cause cancer in the cervix and anus. Most people who become infected with HPV will not have any symptoms and will clear the infection on their own. HIV positive people may take longer to clear the HPV infection, increasing their risk of developing cancer.

How do you get HPV?

HPV can be passed from person to person, even when there are no signs of infection. Although condoms do reduce the chance of infection, they don't offer complete protection against the virus since HPV can be easily spread by skin-to-skin contact with areas of the body not covered by condoms. Because HPV is spread through skin-to-skin contact, both men and women who are sexually active are at risk for getting HPV .

Do a lot of men have HPV?

Yes, men who have sex with men do have higher rates of HPV infection than heterosexual men. At some point in their lives:

  • At least 50 percent of all sexually active men get HPV
  • More than 65% of HIV negative gay men get HPV
  • More than 90% of HIV positive gay men get HPV

What are the signs of HPV infection?

Genital warts are the most easily recognizable sign of HPV infection. Genital warts are single or multiple growths that appear around the anus or on the penis, testicles, groin or thighs.Warts may appear within weeks or months after sex with someone who is infected. Sometimes, the virus remains 'silent' in someone's system -- in these cases, the people never develop warts even though they have the type of HPV that causes them. Genital warts can be surgically removed, frozen off or treated with medication. Warts sometimes do return, especially within the first few months of treatment.

Is there a cure?

Unfortunately, there is no cure for HPV. The good news is that most people who become infected with HPV clear the virus on their own (which means that the virus won't cause them any long term harm). There are several vaccines to prevent HPV infection in boys and girls. These vaccines must be given before a person is exposed to HPV. But once a person is exposed to HPV, there is no cure, just treatment of the warts and lesions caused by HPV.

What is the link between HPV & anal cancer?

Most HPV infections do not cause cancers, but some do. The types of HPV that can cause genital warts are not the same as the types that can cause anal cancer. In a small number of people, certain strains of HPV can cause abnormal skin cells to grow in the anal canal. Sometimes, these changes can gradually worsen and develop into pre-cancerous cells. If left unchecked, in a small proportion of people, anal cancer can develop over a period of many years.

Is there a test to screen for HPV-related cancers in men?

Unfortunately, there are no approved tests to detect the early evidence of HPV-related cancers in men. Women, however, do have an approved test -- the PAP smear. Once abnormal growths have formed, which can take 20 - 30 years, they can often be detected during a routine digital rectal exam or anoscopy.

What is anal cancer?

Anal cancer occurs when skin cells grow out of control in the anus, the area just a few inches inside the butt. The causes and location of anal cancer should not be confused with colon or rectal cancer which are different.

What causes anal cancer?

About 90% of anal cancers are caused by the Human Papillomavirus or HPV. There are many strains or types of HPV and not all of them cause cancer. Most cancers of the cervix and anus are caused by HPV strains 16 and 18. Other HPV strains cause genital warts. HPV is the most common sexually transmitted disease and most people are exposed to HPV over their lifetime. HPV infection usually goes away on its own. However, when the immune system is damaged by HIV, HPV infection can last longer and cause changes to the skin inside the anus called “dysplasia.” Over time, some of these HPV-damaged cells (which are called “High-Grade Squamous Intraepithelial Lesions” or HSIL) can develop into cancer. HSIL is not the same as cancer, but it is a warning sign that cancer may one day develop in that spot. We don’t know why some HSIL go away on their own while others get worse and develop into cancer.

Who can get anal cancer?

Anyone can get anal cancer, but it is much more common for people who are HIV-positive than HIV-negative. For perspective, in HIV-negative people the chance of developing anal cancer is 1-2 people per 100,000. In HIV-positive people it is between 30-131 per 100,000. (The rate in HIV positive women is lower than in men.) Even those on successful antiretroviral therapy have a higher risk of anal cancer than HIV-negative people. People who have never had anal sex can still get anal cancer.

What are the signs of anal cancer?

The early stages of anal cancer usually have no symptoms which means most people are unaware when they begin to develop cancer. In later stages the most common symptom reported is pain, which can be felt constantly or felt only when using your anus to go to the bathroom or have sex. A lump or bleeding from the anus can also be symptoms of anal cancer. Anal cancer is often misdiagnosed as a hemorrhoid. If you are having any of these symptoms it’s important to tell your doctor.

How is anal cancer treated?

When caught early, anal cancer usually responds well to treatment. Some small cancers can be removed surgically. However, once the cancer spreads treatment may require a combination of drugs (chemotherapy), radiation, and surgery. The earlier anal cancer is found and treated, the fewer side effects from treatment. 

Is there a cure for anal cancer?

Removing the affected areas can “cure” anal cancer but there are often long term side effects from the surgery, radiation, and chemotherapy. People with a history of anal cancer need to be checked regularly to make sure the cancer doesn’t grow back.

What are the risk factors for anal cancer?

  • Infection with certain strains of Human Papillomavirus (HPV)
  • Age - risk goes up as you get older
  • Having a low CD4 count in the past
  • Smoking
  • For women: A history of HPV related cervical and vulvar dysplasia and/or cancers
  • History of genital warts

 

What's a good website with more anal cancer info?

What's it like to have anal cancer?

Follow the links below to hear from men and women who have had anal cancer:

  • Thriver Stories. These are the stories of anal cancer thrivers. We prefer to use the word thriver because surviving isn’t enough — we believe that every person with cancer should be empowered with the resources to thrive. We welcome you to read the experiences of others who have had anal cancer and encourage you to send your own stories to info [at] analcancerfoundation.org. Please note that these individuals speak about their treatment plans. Speak to your doctor about what is right for you.
  • Anal cancer Survivor - David's Story. David shares his personal experience with anal cancer: his initial reaction to the diagnosis; the battle coming to terms with it; facing the treatment options and finally overcoming the cancer.
  • Anal Cancer: Living Life Four Months At A Time. Nearly two years ago, Michele Longabaugh was told she had anal cancer. Yet, she says, she had none of the risk factors. This is part one of a two-part series focusing on anal cancer and how one woman lives life four months at a time and copes with the stigma that comes with it. The four months is the length between her CT scans that will tell her if her cancer has returned. Michele agreed to do the story and has created an incredible and intimate blog that details her struggle with anal cancer. When you access it, go to the archives and start at the beginning. It was and is Michele's way of coping with a disease that no one wants to talk about.
  • Living and Thriving After Treatment for Anal Cancer: Addressing Long-Term Treatment Side Effects. At an educational forum for anal cancer survivors, a panel of experts discussed side effects often experienced by individuals treated for anal cancer. Panelists addressed the short and long-term quality of life effects after chemotherapy and radiation and management of these side effects. This event was sponsored by The HPV and Anal Cancer Foundation, the UCSF Helen Diller Family Comprehensive Cancer Center, and the Farrah Fawcett Foundation. Co-sponsors include the UCSF Alliance Health Project, Project Inform, the Shanti Project, and the International Anal Neoplasia Society.

 

Joining the ANCHOR study involves several steps

Step 1. Fill out the Contact Form

Fill out the Online Contact Form or call our toll free number 1 844 HIV-BUTT (1 844 448-2888) if you would like to do it by phone instead. The contact form will ask you some screening questions to see if you are eligible for the study. If you are eligible, then we will contact you to tell you about the next information visit near you.

Step 2. The Information Visit

We would be honored to have you join our study. We also understand that this study is not for everyone and we want all our volunteers to make an informed decision about whether joining the study is right for them. The best way to learn about the study is to attend an information visit. This is a good time to ask a lot of questions and there may be others who may ask questions you didn’t realize you had. We encourage you to keep asking questions and you can call our toll free number 1 844 HIV-BUTT (1 844 448-2888) for answers.

Step 3. The Screening Visit

If you are still interested in joining the study after the information session, we will collect your contact information to schedule the next available screening visit. The screening visit will last approximately 2 hours. You will need to bring a document showing that you are HIV positive. At the screening visit, you will first read a document that details all the study procedures you can expect, the risks and benefits of being in the study, and how we will protect your privacy and confidentiality. If you agree to be screened, we will continue with the screening visit, which will consist of asking several questions about your medical and medication history. In addition, a study doctor will do some tests in a private room to see if you qualify for the study. You will change into a hospital gown and lie down on your side or face down. When you are ready, the doctor will insert and remove three small cotton swabs to collect samples of the skin cells. These swabs are called an "anal Pap" or "anal cytology." Then the doctor will use a gloved finger and some lube to feel just inside your anus for any lesions caused by HPV. This is called a digital anal rectal exam. Then the doctor will insert a small clear plastic anoscope in your anus, then a swab soaked in vinegar to make the HSIL more visible under the microscope. After removing the swab, the doctor will then use a microscope attached to a camera to look at the skin inside your anus for any signs of HSIL made visible by the vinegar. If found, the doctor will numb the area and take a biopsy of the lesion and send it to another specialist who will look at the biopsy under a microscope for signs of dysplasia. At the screening visit, the study team will also collect some blood samples. During the visit, the doctor will explain to you what they saw and whether they think you have any visible dysplasia. This is a good time to ask questions.

Step 4. Results of the Screening Visit

To diagnose HSIL, we need wait for the results of the biopsy to come back from the lab. This usually takes 2-6 weeks. As soon as we get the biopsy results, the study team will call you and let you know if you are eligible for the study.

Step 5. Enrollment Visit

If you are eligible, we will schedule your enrollment visit. At the enrollment visit, you will be checked again using the anoscope to check if the HSIL is still the same size as in the last visit. The doctor will use a computer program to randomly assign you, like flipping a coin, into either the active monitoring group or the treatment group. Neither you nor study staff can choose which group you are assigned to. You will take a questionnaire about risk factors for anal cancer. If you are assigned to the treatment group, the study doctor will discuss your preferred HSIL treatment options based on the size and location of the HSIL. Depending on which treatment you and the doctor decide to try, you will either get treated at that visit or take home some cream to use at home before bed.

Step 6. Next Visits

The timing of your next visit will depend on whether you are randomized to the treatment or monitoring group. Participants in the treatment arm will come back in a few weeks to check if the treatment worked and get another treatment if necessary. Participants in the active monitoring arm will come back in six months to have their HSIL checked. If at any time, your HSIL changes and looks like it might be developing into cancer, you will be immediately referred for cancer treatment.

Will I be at a heightened risk for cancer during the study?

It isn’t expected that any treatment you receive in this study will heighten your risk for cancer. You will be closely monitored for anal cancer for the entire duration of the study. If you start to show pre-cancerous or cancerous changes, we will immediately refer you to another doctor for appropriate treatment.

How long will I be in the study?

The researchers plan to recruit volunteers for the study over a period of three years or more. We will follow all participants for at least five years after the last participant starts the study. Participants who start the study in the first year may be in the study for up to eight years or more. You will be assigned to one study arm (treatment or active monitoring) for the entire study. Initially (for the first few months) you may need to come in every few weeks, but after that you will come in every 6 months for the remainder of the 5-8 years. In total, you can expect 12-18 study visits, including the screening visit, and each visit lasts approximately 2 hours. Total time commitment will be between 25-36 hours over the course of 5-8 years.

Will I be paid?

Eligible participants who enroll in our study are paid $100 per study visit to compensate for time, effort, and travel expenses. If you attend every scheduled visit, the amount of money we pay you will total between $1200-$2100, depending on which group you are randomly assigned to and which treatment type you receive if you’re assigned to the treatment group.

Will I experience any pain while in the study?

Most people find the screening of anal lesions to be somewhat uncomfortable. It’s also possible that you will experience some discomfort in the days following your exam. Your doctor will advise you on self-care that may alleviate discomfort. For both screening and treatment of anal lesions, we will numb the local area to minimize discomfort.

What will be expected of me during the study?

Participants are expected to do the best they can to make it to scheduled appointments. Our study staff will give you courtesy reminders prior to all of your study visits. If an emergency comes up and you can’t make it to your appointment, we ask that you give us a heads up so we can reschedule you as soon as possible. Depending on the type of treatment you are receiving, you may need to complete some treatment or monitoring at home. As a study participant you are expected to follow all of your clinician’s directions, and let us know if you’re having any trouble with what you are being asked to do. We also expect you to ask lots of questions! We want you to clearly understand what we are doing and why, and we’re here to provide the best care possible.

Can I have sex while in the study?

Yes! You may undergo some procedures that will require you to abstain from receptive anal intercourse for several weeks, but after that you should be good to go!

Is this study ethical?

The design of this study is the only way to definitively test whether treatment of anal HSIL can help prevent anal cancer. Participants in the active monitoring group may be at risk of progressing to anal cancer. However, we don’t know whether treating HSIL will prevent cancer, and individuals in the treatment group may be at similar risk. If treatment of HSIL is shown to be ineffective at reducing cancer risk, participants in the observation group will be spared the discomfort and potential risks of treating HSIL.

Can I back out of the study at any time?

Participants in any research study have the right to leave at any time without fear of retaliation or damaging relationships. We will do our best to make sure you have a positive experience in the study. This includes providing you with proper expectations of what we will ask you to do. In between study visits, we will check in with you by emailing a questionnaire where you can tell us about any difficulties you experience in the study. We will work closely with you to address your concerns because our first priority is to protect your well-being.

What’s in it for me?

This is a groundbreaking study for the health and well-being of people at risk for developing anal cancer. If we find that treating HSIL is effective at reducing risk for cancer, we anticipate a major shift in how medical providers care for their patients. We also expect insurance companies to start paying for HSIL screening and treatment. So, just like the brave HIV+ volunteers who helped in the development of life-saving HIV medications, you can have a similar impact on the health and longevity for others living with HIV. Also, since anal cancer disproportionately affects people with HIV, this study could allow some volunteers to express their social justice values. There are potentially several other reasons why you would feel good about your participation. No matter what your motivations are for entering this study, we believe all our study volunteers are heroes!

Will the study share any of my information with other organizations?

Your privacy is very important to us and we will make every effort to protect it. Your information may be given out if required by law. For example, certain states require doctors to report to health boards if they find a disease like gonorrhea. However, we will do our best to make sure your information will not identify you. Some of your health information, and/or information about your specimen, from this study will be kept in a central database for research. Your name or contact information will not be put in the database.

Which treatment will I get?

You and your doctor will decide together which treatment to use based on

  • Size of HSIL
  • Location of HSIL
  • Your preferences or ability to tolerate the treatment

What are the treatments for HSIL?

Treatment of HSIL usually requires more than one visit.  HSIL often comes back in the same or new location. If one approach to treatment is not working, another treatment may be tried.

There are three approaches to treatment in the ANCHOR study.

HEAT IS APPLIED TO THE HSIL

Using an anoscope and a camera to see inside the anal canal, vinegar is swabbed on the skin to make the HSIL show up as white.  The area to be treated is numbed with a numbing jelly followed by an injection of lidocaine. Heat is applied to the HSIL for a split second to the lesion using either
  • a machine called an "infra-red coagulator" (IRC) which uses a quartz wand to apply heat to the lesion or
  • "Electrocautery" which uses a thin loop of wire as an electric scalpel to burn off the lesion

CREAM IS APPLIED TO THE LESION

You will apply Imiquimod or 5-fluorouracil cream to your anus at bedtime every night for several weeks using your gloved finger.

SURGERY

Surgery is rarely used except in cases where the HSIL is spread over a large area or will not respond to the other treatments.

What are the side effects of treatment?

Pain at site of biopsy and heat treatment. Bleeding may last up to a week but is a normal part of the healing process. Pain may be worst when going to bathroom. Drinking lots of water, stool softeners, sitz baths and tylenol can all help with pain when going to the bathroom. When using the Imiquimod and 5-FU creams, you will get a rash as these creams act like a chemical peel of the anal skin. You may need to take a day off work. Surgery may require several days off work as you recover from the effects of the anesthesia and the surgery. You will need to take a few weeks off from anal sex.

Why compare treatment to monitoring?

We don't know if treating HSIL actually prevents anal cancer. The ANCHOR study is designed to answer this question by comparing treatment of HSIL against active monitoring of HSIL with no treatment. Unlike many trials that compare the effectiveness of two or more treatments, the ANCHOR Study is simply comparing treatment vs. no treatment. This means that if you are randomized to the treatment arm, you may get one or a combination of treatments for HSIL, similar to what you would receive outside the study.

What are the advantages of being in the Active Monitoring Arm?

Treating anal HSIL may not be better than active monitoring to reduce the risk of anal cancer. If so, you would have avoided uncomfortable treatments that provide little benefit to you.

What are the disadvantages of being in the Active Monitoring Arm?

You may be anxious knowing that you have anal HSIL that is being closely monitored but not being treated. The study may show that the risk of progressing to cancer is higher if you are being watched instead of being treated.

What are the advantages of being in the Treatment Arm?

The study may show that the risk of progressing to cancer is lower if you are being treated instead of being watched.

What are the disadvantages of being in the Treatment Arm?

Each of the treatments has discomfort and side effects associated with them. You may need more than one kind of treatment over the course of the study, and even then it is possible that the doctors may not be able to remove all of the HSIL. If the study shows that those treatments were not helpful in reducing the risk of progressing to cancer, you may have had discomfort and side effects due to treatment that did not help you.

What are the advantages of being in either arm of the study?

If you do develop cancer during the study, there is a chance that the cancer may be caught earlier than if you were not in the study and not being followed at all. Cancers caught earlier tend to respond better to treatment, and may possibly be treated with a simple local removal in the operating room instead of chemotherapy and radiation therapy.

What is HPV?

HPV (Human Papillomavirus) is the name of a group of sexually transmitted viruses that includes more than 80 different strains or types. HPV is one of the most common STDs in the world. HPV is the cause of warts which usually appear in the groin area. HPV strains 16 and 18 are more likely to cause cancer in the cervix and anus. Most people who become infected with HPV will not have any symptoms and will clear the infection on their own. HIV positive people may take longer to clear the HPV infection, increasing their risk of developing cancer.

How do you get HPV?

HPV can be passed from person to person, even when there are no signs of infection. Although condoms do reduce the chance of infection, they don't offer complete protection against the virus since HPV can be easily spread by skin-to-skin contact with areas of the body not covered by condoms. Because HPV is spread through skin-to-skin contact, both men and women who are sexually active are at risk for getting HPV .

Do a lot of men have HPV?

Yes, men who have sex with men do have higher rates of HPV infection than heterosexual men. At some point in their lives:

  • At least 50 percent of all sexually active men get HPV
  • More than 65% of HIV negative gay men get HPV
  • More than 90% of HIV positive gay men get HPV

What are the signs of HPV infection?

Genital warts are the most easily recognizable sign of HPV infection. Genital warts are single or multiple growths that appear around the anus or on the penis, testicles, groin or thighs.Warts may appear within weeks or months after sex with someone who is infected. Sometimes, the virus remains 'silent' in someone's system -- in these cases, the people never develop warts even though they have the type of HPV that causes them. Genital warts can be surgically removed, frozen off or treated with medication. Warts sometimes do return, especially within the first few months of treatment.

Is there a cure?

Unfortunately, there is no cure for HPV. The good news is that most people who become infected with HPV clear the virus on their own (which means that the virus won't cause them any long term harm). There are several vaccines to prevent HPV infection in boys and girls. These vaccines must be given before a person is exposed to HPV. But once a person is exposed to HPV, there is no cure, just treatment of the warts and lesions caused by HPV.

What is the link between HPV & anal cancer?

Most HPV infections do not cause cancers, but some do. The types of HPV that can cause genital warts are not the same as the types that can cause anal cancer. In a small number of people, certain strains of HPV can cause abnormal skin cells to grow in the anal canal. Sometimes, these changes can gradually worsen and develop into pre-cancerous cells. If left unchecked, in a small proportion of people, anal cancer can develop over a period of many years.

Is there a test to screen for HPV-related cancers in men?

Unfortunately, there are no approved tests to detect the early evidence of HPV-related cancers in men. Women, however, do have an approved test -- the PAP smear. Once abnormal growths have formed, which can take 20 - 30 years, they can often be detected during a routine digital rectal exam or anoscopy.