Frequently Asked Questions

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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.

 

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.

What if I do not see my State in the Study Site Drop Down Menu?

Sites in the drop down menu are listed in alphabetical order by state or territory. At this time, we are not opening any new sites for the ANCHOR Study.

What if I am a Provider and interested in the HRA courses?

If you are a provider and are interested in HRA courses, let us know via the ‘Let’s Talk’ form on our site. We will be happy to connect you to clinician trainers at UCSF.