Information about your HANS assessment, HPV and AIN

Information about your HANS assessment, HPV and AIN Incorporating hospital and community health services, teaching and research

This booklet has been written for people attending the Homerton anal neoplasia service. It contains a lot of information some of which is quite technical and medical. We want to give you all the information you might need to enable you to understand the whats and whys of the service you will be receiving. If this is the first time you have come to this service then you probably have concerns about your symptoms and fears about the process ahead. This is understandable and we hope that the information in this leaflet will help to allay any anxieties you may have. You will find additional information about HPV in the following pages, and also you could look at: The NHS Choices www.nhs.uk/chq/pages/2611.aspx Cancer Research UK www.cancerresearchuk.org/about-cancer/cancers-ingeneral/cancer-questions/what-is-the-hpv-virus If you have any questions about the contents of this leaflet or any other concerns regarding your assessment and/or treatment then please speak to your clinician. 1

Contents 1 Your HRA assessment... 3 What is HRA (high resolution anoscopy)... 3 How to prepare for the procedure... 4 The HRA procedure... 4 Taking a biopsy... 6 What if the biopsy is abnormal... 7 2 HPV, Anal Warts, and Anal Dysplasia... 9 What is HPV?... 9 What are the symptoms of HPV, anal warts and anal dysplasia? 11 How is HPV-related disease treated?... 12 Chemical destruction... 12 Immune therapy... 13 Surgical destruction... 13 Is there an HPV vaccine?... 13 3 About AIN... 14 How bad is my AIN?... 14 What causes AIN?... 15 Am I going to get anal cancer?... 16 How should my AIN be treated?... 17 How can I stop my AIN coming back when it goes?... 17 Help for stopping smoking... 18 2

The Homerton Anal Neoplasia Service is a referral centre that provides a screening and treatment service for people at risk, or, who have developed, precancerous lesions in the genital area. This includes the anal canal, the skin surrounding the anus, penis, vagina and vulva. We have a team of experts to give you information and look after you. 1 Your HRA assessment This section provides information about the high resolution anoscopy (HRA) examination. It describes how you should prepare for it, what happens during the examination and what to expect afterwards. What is HRA (high resolution anoscopy) High resolution anoscopy, or HRA, is a procedure that allows for examination of the anal canal and surrounding skin using a colposcope. This procedure is used to check for abnormal cells that have a higher likelihood of turning into cancer. A Colposcope is a device that magnifies the area being examined. Who should have HRA People who have a higher risk of developing anal cancer. This includes both men and women who are immunosuppressed; this could be due to HIV infection, organ transplants, long term steroid use or other medicine that suppresses immune function, or any other condition that affects the immune system. 3

People who have a history of anal dysplasia (precancerous changes) or cervical or vulval dysplasia (women). How to prepare for the procedure You do not need to do anything special in order to prepare for the assessment. Starting 24 hours before your examination, avoid using any douches, enemas or creams that are applied to the anal canal. It is also important to avoid anal sex. The procedure is performed on an outpatient basis. The total time of the procedure is between 30 minutes and two hours. The HRA procedure We ask you to remove the lower half of your clothes and you are given a gown. During an examination of your anal canal you will usually be asked to lie on your back with your legs propped up in stirrups, or, you may be asked to lie on your side. An anal pap smear is performed. This involves gently pushing a fine thin brush into the anal canal to obtain cells from the lining of the anus to be looked at under a microscope. The clinician will examine the anal canal with a finger to feel inside the anus and rectum for abnormal growths and will also examine the skin around the anus for any abnormalities (digital anorectal examination; DARE). A thin hollow tube called a proctoscope will be coated with a lubricant and inserted about two inches into the anus. The procedure is usually very well tolerated with mild, if any, discomfort. Significant risks such as bleeding or infection are extremely rare. 4

Source: Bowel Disease Research Foundation Next, a cotton swab covered with mild (5%) acetic acid will be inserted through the proctoscope into the anus. Acetic acid is generously and continually applied during the examination to highlight areas of disease. The acetic acid on the cotton swab will cause any abnormal cells to turn white; these are called Acetowhite areas. Acetowhite areas/lesions with specific vascular characteristics like punctation or honeycomb patterns are highly suggestive of high grade disease. 5

The colposcope provides magnification of up to 30 times. With it, the clinician performing the examination can detect any abnormal cells (areas) using the characteristics described above. Should you wish, you can watch what is happening on the screen. All procedures are done using sterile or single-use equipment Taking a biopsy After careful and thorough examination, the specialist may inform you that there are some abnormalities present and that a biopsy (a small sample of tissue that is sent to the laboratory for analysis) may be indicated. A local anaesthetic will be injected before the biopsy is taken to help minimize any discomfort. The tissue sample removed during the biopsy will then be sent to a pathologist for further examination. In three to four weeks the specialists will contact you with your results and decide on possible treatments or further follow up. At this point a letter is sent out to you and a copy to your GP / Referring doctor. What happens after HRA Opening your bowels can sometimes trigger slight bleeding, but it usually stops very quickly. If a biopsy has been taken, some bleeding may be expected over three to seven days in some instances. If bleeding is heavy please contact us or visit your GP. If you develop a fever of 38 degrees centigrade or above please seek medical attention. 6

Healing of the biopsy sites occurs over four to seven days, usually without any scarring. Nothing should be inserted into your anus until healing is complete. What if the biopsy is abnormal A biopsy may be abnormal because it contains either precancerous changes associated with human papillomavirus (HPV, the warts virus) or actual cancer. Pre-cancerous changes are called intraepithelial neoplasia or dysplasia. Precancerous changes are graded from one to three depending on severity. Anal changes are called Anal Intraepithelial Neoplasia (AIN) Perianal changes are called Perianal Intraepithelial neoplasia (PAIN) Vulval changes are called Vulval Intraepithelial Neoplasia (VIN) Vaginal changes are called Vaginal Intraepithelial Neoplasia (VAIN) Penile changes are called Penile Intraepithelial neoplasia (PIN) Invasive anal cancer requires appropriate treatment. Small growths are removed surgically. Larger growths are usually treated with a combination of surgery, radiation and chemotherapy. Cancer management is decided at the cancer Multi- Disciplinary Team (MDT) meeting which is made up of a group of specialists. 7

Possible complications These may include. Infection: this is not usually a problem since any wounds created during the procedure are left open to heal and do not trap infection as in a closed wound. The anus normally has good, local immune support. Bleeding, due to minor trauma of the anal mucosa or biopsy, may happen up to seven days after the procedure. There may be local discomfort for three to seven days after the procedure; a mild painkiller such as paracetamol may be needed to ease the discomfort. Aftercare following high resolution anoscopy (HRA) For three to seven days Avoid heavy exercise such as jogging which may cause bleeding and discomfort. Drink plenty of fluids to help prevent constipation unless advised by another clinician for an underlying medical problem. Increase the fibre content of your diet to help make stools softer. Avoid cigarette/tobacco smoking and passive smoking which increases the risk of developing pre-cancerous changes in the future. Avoid receptive anal intercourse or the use of anal sex toys that may increase risk of trauma and bleeding. 8

Precautions Advise the clinician if you have had recent anal or rectal surgery. 2 HPV, Anal Warts, and Anal Dysplasia What is HPV? HPV stands for Human Papillomavirus. It is a very common virus that is spread by direct contact, and infects skin cells and mucosae. The mucosae are the moist membranes that line different parts of the body, including the mouth, throat, genital and backpassage area. When a cell is infected by HPV, the HPV genes (instructions in living organisms used to make proteins) may become part of the genes of the skin cell and change the way it behaves. There are over one hundred types of HPV and about 40 of these can affect the genital area. Some types of HPV can cause skin warts and verrucas but many types do not cause any problems or harm at all. Penile warts Source: Homerton Anal Neoplasia Service 2017 9

Genital warts Source: Homerton Anal Neoplasia Service 2017 Most adults get HPV at some point in their lives, and in most cases the body will get rid of the virus without us ever knowing we had it. However HPV is also linked to the development of abnormal cells. If left untreated, these abnormal cells may go on to develop into cancer in a small number of people. What changes does HPV cause? Once the skin is exposed to HPV, four possible results may occur. 1. The body s immune system may be able to clear the infection. It is still possible to become re-infected through later contact. 2. The body is not able to clear the HPV infection, and the HPV genes become part of the infected skin cell. The virus may stay dormant in the skin cell. The skin cell is infected with HPV indefinitely, but the skin cell behaves normally and there are no noticeable changes. However, the virus may become active many years later. 10

3. The body is not able to clear the HPV infection, and the viral genes cause the skin cell to grow in an abnormal way and produce a visible growth a wart. 4. The body is not able to clear the HPV infection, and the viral genes cause the skin cells to undergo changes that could lead to skin cancer. These changes are called dysplasia. Some HPV subtypes such as types 16 and 18 are more likely to produce cancerous or precancerous changes. What are the symptoms of HPV, anal warts and anal dysplasia? Patients with dormant HPV infection or a small number of anal warts usually have no symptoms. Other patients may notice small growths in the anal area that may increase in size or number. They may experience anal itching, burning or tenderness, anal bleeding, or anal discharge. In some patients, the warts may become very large and cause pain, significant discharge and odour, or interfere with the ability pass bowel movements. In men, genital warts mainly appear on the penis and scrotum. In women, they tend to be seen on the vulva, vagina and cervix. Both sexes may be affected in the perineum, around the anal area and inside the anal canal. The majority of external genital warts are caused by HPV types 6 and 11 which are not associated with significantly increased risk of transformation into precancerous cells. 11

However, 10% of genital warts are caused by HPV types 16 and 18 and these types are associated with an increased risk of Cervical cancer vaginal, vulval and penile cancer anal cancer mouth and throat cancer More about precancerous cells and dysplasia can be found in the section below, About AIN. How is HPV-related disease treated? There are three main treatments for HPV related disease: chemical destruction, immune therapy, and surgical treatment. The choice of treatment for warts depends on how much disease is present and whether it is on the skin outside of the anus or in the lining inside the anal canal. Very small lesions may be treated with topical medications; however most warts need to be removed surgically. Once anal dysplasia develops, surgical destruction is necessary. Chemical destruction The most common chemical used to treat anal warts is Podophyllotoxin. This is applied directly on to the wart surface. It usually takes several weeks for a response to happen. Reappearance of warts is common. Other substances like Trichloroacetic acid or 5 fluorouracil are rarely used. The response rates are similar. 12

Immune therapy Imiquimod (Aldara) is a cream that is approved for the treatment of warts. It is typically applied for ten hours at a time, usually three times each week overnight, for up to 16 weeks. It often reduces the number and size of the warts and may or may not completely treat them. We recommend its use both externally and in the anal canal. Surgical destruction Surgical treatment may involve destroying the warts or removing them. There are several ways to destroy warts. Warts may be frozen (cryotherapy with liquid nitrogen) or burned (infrared coagulation - IRC, electrocautery, or laser). Surgical excision has the additional benefit of obtaining tissue for microscopic examination to look for dysplasia or cancer. These treatments usually require either local or general anaesthesia. It is important to realise that regardless of the treatment, recurrence of HPV is common. Skin cells outside of the visible area of disease may already be infected and not detectable until new warts form. Is there an HPV vaccine? There are three vaccines available for HPV: Cervirax, Gardasil and Gardasil9. These vaccines have been developed for two, four, or nine subtypes of HPV, including those most likely to cause cancer. HPV vaccination is part of the national vaccination programme and is currently given to girls around the age of 12 years. The joint committee for vaccination (JCVI) has also recommended HPV vaccination for men who have sex with men, from 16-40 13

years, and is now released as a pilot scheme in a small number of centres. HPV vaccination may be beneficial for those already infected with HPV, enabling better infection control and prevention of cancer, but there is not yet sufficient evidence for general recommendations. HPV vaccination for people outside the vaccination programme is currently only available privately. 3 About AIN AIN is short for anal intraepithelial neoplasia and we often refer to it as anal precancer, as some forms of it can be serious. However, it is important to be clear that it is not cancer. If you have been told you have AIN, it is likely that it has been found due to a biopsy that has been taken, on an anal smear test, or, on looking with a microscope at the peri-anus (the skin around the anus) and/or the anal canal. Neoplasia: microscopic cell changes seen as cells undergo the process of becoming cancerous. Intraepithelial: the abnormal cells have not gone further than the epithelium or the lining of the anus. How bad is my AIN? There are three stages to AIN: AIN 1: when the abnormal (neoplastic) cells involve one third (1/3) of the thickness of part of the lining (epithelium). Also called low-grade. 14

AIN 2: when the abnormal (neoplastic) cells involve two thirds (2/3) of the thickness of the lining (epithelium). Also called moderate-grade. AIN 3: when the abnormal (neoplastic) cells are seen throughout (3/3) the whole thickness of an identified area of the lining (epithelium). Also called high-grade. The next stage after AIN 3 is early invasion or anal cancer itself (see anal cancer leaflet). This sounds worrying, but we know that the body can reverse these changes much of the time, and AIN 1 usually goes away on its own, without treatment. AIN 2 and 3 are less likely to go away on their own, and we think that there is approximately a 10% (or one in ten chance) of them becoming a cancer over approximately five to ten years. For this reason, AIN 2 and 3 have another name, HSIL. This is because HSIL can appear in a number of places, not just the anus. HSIL is short for high grade squamous intraepithelial lesion and can be seen in the other areas that have the squamous-type of lining (squamous is the name for the type of cell). This can be in the vulva, vagina and cervix in women, and the penis in men. When we find anal HSIL (or AIN grade 2 or 3), we usually also look in other areas to make sure that HSIL has not appeared in any other site. What causes AIN? In 90% of cases, AIN is linked to infection with the human papilloma virus (HPV). As mentioned above, HPV infection is extremely common. Not everyone who comes into contact with 15

the HPV virus will get AIN. HPV virus also causes warts. Not everyone who has had warts will develop AIN. Why do some people infected with HPV get AIN and some do not? Not everything is known yet about AIN. We know that immunosuppression of any kind weakens the body s defences against the HPV virus and makes AIN more likely, often some years later. This includes: HIV infection (even if well-controlled) organ transplants inherited immune defects immune-suppressing drugs AIN is more common in those who practise receptive anal sex, especially men who have sex with men (MSM), irrespective of HIV status Smoking is a known risk factor for AIN. However some people have AIN without any risk factors. It is hoped that the HPV vaccine will eventually make AIN very uncommon. As far as we know at present, once you have been infected with HPV (which most sexually active people have been), the vaccine may not work to treat or prevent AIN. Studies are underway to try and improve scientific knowledge in this area. Am I going to get anal cancer? If you have AIN 1 (low grade AIN) the chances of cancer are extremely low. This kind of AIN usually gets better on its own. 16

We suggest you may wish to have a further HRA examination to follow it up. If you are immunosuppressed we may suggest that you are followed up over a longer period. If you have AIN 2 or AIN 3 (high grade AIN) also known as anal HSIL (see above), then as we now know about your AIN, we can keep it under surveillance with the whole aim of preventing cancer. How should my AIN be treated? At present, we suggest 1. If you have low-grade AIN then you do not need treatment. We will suggest that testing is repeated in the future. 2. If you have high grade AIN or HSIL of the anus then we will suggest further follow-up with HRA (high resolution anoscopy). 3. For persistent areas, and wide areas of AIN, topical treatment (creams you apply yourself) can be used: imiquimod (Aldara) and 5 fluorouracil are both types of cream that can be prescribed for use two to three times weekly for three to four months. This treatment is most successful for AIN in the skin around the anus. 4. In some cases, laser ablation of the AIN/HSIL is suggested. How can I stop my AIN coming back when it goes? Recurrence of AIN is common: the predisposing factors are sometimes not possible to remove completely, and we cannot at present eliminate the HPV virus. Again, studies are underway to try and understand this better and reduce the recurrence rate, including studies that use the 17

HPV vaccine. At present, there is no evidence that the HPV vaccine given after you have AIN, helps prevent recurrence. For large areas affected by AIN, recurrence is likely within the first two years so we like to see you every six months for a check-up. If you have had treatment, then residual areas of disease or areas where it has recurred are likely to be much smaller the next time. If you are a smoker, now is a good time to stop, as it is one way you can reduce the recurrence rate of AIN. Help for stopping smoking Tel: 020 8510 7248 /mobile 07919 545 762 You can refer yourself. All products free for 12 weeks on NHS stopsmoking@homerton.nhs.uk Self-referral cards Simply fill one out and place it into the ballot box (these are situated around the hospital in the following places; A&E, Main outpatients, Main reception, Day Stay, outside the canteen and by the lifts on the yellow and blue corridor). Drop in service every Friday from 2-5pm in Outpatients room 12 for people who prefer to not make an appointment. 18

Where can I get more information? HANS Clinical Nurse Specialist 020 8510 5296 NHS Choices www.nhs.uk/conditions/cancer-of-the-anus/ Cancer Research UK www.cancerresearchuk.org/about-cancer/type/anal-cancer/ Reference(s) www.gov.uk/government/uploads/system/uploads/attachm ent_data/file/373531/jcvi_interim_statement_hpv_vacc.p df Patient Advice and Liaison Service (PALS) PALS can provide information and support to patients and carers and will listen to your concerns, suggestion or queries. The service is available between 9am and 5pm. 0208 510 7315 07584 445 400 PALS@homerton.nhs.uk If you require this information in other languages, large print, audio or Braille please telephone the Patient Information Team on 0208 510 5302, text: 07584 445 400 or email: patientinformation@homerton.nhs.uk Produced by: Homerton Sexual Health Service, SWSH Homerton University Hospital NHS Foundation Trust Homerton Row, London E9 6SR 0208 510 5555 www.homerton.nhs.uk enquiries@homerton.nhs.uk Date produced: March 2017 Review date: March 2019 19