Anal Cancer Overview

Transcription

1 Anal Cancer Overview This overview is based on the more detailed information in our document Anal Cancer. What is anal cancer? Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer? Anal cancer starts in the anus. To understand anal cancer, it helps to know about the anus. The anus The anus is the body s opening at the lower end of the intestines. The anus is about an inch and a half long and connects the lower part of the large intestine to the outside of the body. It opens to allow stool (feces) to leave the body during a bowel movement. Much of the inner wall of the anus is lined with cells called squamous cells. Most anal cancers start in these cells. But there are other types of cells here as well, and sometimes cancers start in these other cells.

2 Many kinds of tumors can grow in the anus. Benign anal tumors (not cancer) Not all anal tumors are cancers some are benign, which means they are not cancer. There are also some growths that start as benign but over time can change into cancer. These are called pre-cancerous conditions. A common term for these potentially precancerous conditions is dysplasia. Some warts, for example, contain areas of dysplasia that can develop into cancer. Benign tumors include some kinds of warts, polyps, skin tags (small pieces of skin that hang loose from the body), and others. To find out more about benign anal tumors, see our detailed document Anal Cancer.

3 Anal tumors that are cancer Carcinoma in situ Sometimes cells on the surface layer of the anus look like cancer cells but have not grown into any of the deeper layers. This is known as carcinoma in situ (CIS). It may also be called Bowen disease. Some doctors think this is the earliest form of anal cancer and others think it is a pre-cancer but not a true cancer. Invasive anal cancers Different types of cancer can start in the anal region: Squamous cell cancers: These are the most common type of anal cancer and are the focus of this document. The tumors begin in the squamous cells that line much of the inside of the anus. If the tumors are found in the skin around the anus (perianal skin) they are treated like the squamous cell cancers of the skin found elsewhere in the body. To learn more, see our document Skin Cancer: Basal and Squamous Cell. Adenocarcinomas: A small number of anal cancers start in cells that line the upper part of the anus near the rectum or the glands found in the anal area. These cancers are called adenocarcinomas. Most anal adenocarcinomas are treated the same way as rectal carcinomas. For more information on this, see our document Colorectal Cancer. Skin cancers: A small percentage of anal cancers are basal cell cancers or melanomas, which are other types of skin cancer. Melanomas are far more common on parts of the body that are exposed to the sun. Most anal melanomas are hard to see and are found at a late stage. To learn more, please see our documents Skin Cancer: Basal and Squamous Cell and Melanoma Skin Cancer. Gastrointestinal stromal tumors (GISTs): These cancers are more often found in the stomach or small intestine, but rarely, they can start in the anus. When these tumors are found at an early stage, they are removed with surgery. If they have spread beyond the anus, they can be treated with drugs. To learn more, see our document Gastrointestinal Stromal Tumor (GIST). The rest of this document focuses mainly on squamous cell cancers, which account for most anal cancers.

4 What are the risk factors for anal cancer? A risk factor is anything that affects a person s chance of getting a disease such as cancer. Several factors can affect your risk of anal cancer. But having a risk factor, or even several risk factors, does not mean that you will get cancer. And people with few or no risk factors can still get cancer. Risk factors for anal cancer HPV (human papilloma virus) Most squamous cell anal cancers seem to be linked to infection with the human papilloma virus (HPV). Still, most people with HPV infections do not get anal cancer. HPV is a group of more than 150 related viruses. Some types are more likely to cause cancer than others. HPV can also cause cancers of the cervix, vagina, and vulva in women, cancer of the penis in men, and throat cancer in both women and men. HPV is spread from one person to another during skin-to-skin contact with an infected area of the body. HPV can be spread during sex including vaginal, anal and oral sex. It can even be spread through hand-to-genital contact. An HPV infection can also spread from one part of the body to another. This means that an HPV infection can start in the genitals and then spread to the anus. Infection with HPV is common, and in most cases your body is able to clear it up on its own. But in some people the infection does not go away and becomes long lasting (chronic). Chronic infection can eventually cause certain cancers, including anal cancer. HPV in men: For men, the 2 main factors that impact the risk of genital HPV infection are circumcision and the number of sex partners. Men who are circumcised (have had the foreskin of the penis removed) have a lower chance of getting and staying infected with HPV. The risk of being infected with HPV is also strongly linked to having many sex partners (over a man s lifetime). HPV in women: In women, HPV infections occur mainly at younger ages and are less common in women over 30. The reason for this is not clear. A woman s risk is increased if she has sex at an early age and has many sexual partners. But even a woman who has had only one partner can still get infected. For more about HPV and HPV vaccines, see HPV Vaccines.

5 Anal warts Anal warts are caused by infection with HPV, but from types different from those most likely to cause anal cancer. Anal warts themselves are unlikely to develop into anal cancer, but people who have had anal warts are more likely to get anal cancer. Having certain other cancers Women who have had cancer of the cervix, vagina, or vulva are at increased risk of anal cancer. This is likely because these cancers are also caused by infection with HPV. HIV infection People who have the human immunodeficiency virus (HIV), the virus that causes AIDS, are much more likely to get anal cancer than those who don t. For more on HIV and AIDS, see our document HIV Infection, AIDS, and Cancer. Sex Having many sex partners increases the risk of HIV and HPV infection, as well as anal cancer. Having anal sex is a risk factor for anal cancer in both men and women, especially for those under the age of 30. Smoking Current smokers are several times more likely to have cancer of the anus compared with people who don t smoke. Quitting smoking seems to reduce this risk. People who used to smoke but have quit are only slightly more likely to get anal cancer compared with people who never smoked. Weakened immune system People with weak immune systems are at higher risk for anal cancer. This includes people with AIDS and people who have had transplants and who must take drugs to suppress their immune systems. Race and gender Anal cancer is more common in women than men overall and in most racial/ethnic groups. But in African Americans it is more common in men than in women.

6 Can anal cancer be prevented? Since some people with anal cancer have no known risk factors, there is no way to prevent this disease completely. But there are things you can do that might lower your risk of anal cancer. Sex and condom use The best way to reduce the risk of anal cancer is to avoid HIV and HPV infection. The risk of infection is higher for those who have sex with many partners and those who have unprotected anal sex. People can have HPV for years without having any symptoms. So it can be nearly impossible to know whether a sex partner is infected with HPV. Condoms can help protect against HPV (and HIV), but they don t prevent infection completely. That is because HPV can be spread by skin contact from areas that are not covered by the condom. Still, it is important to use condoms to help protect against AIDS and other diseases that can be passed on through some body fluids. HPV vaccines Vaccines can help protect against infection with HPV. They can help prevent anal cancer and pre-cancer. To work best, these vaccines should be given before a person is exposed to HPV (by having sex). For more about HPV vaccines, see HPV Vaccines. Treating HIV In people infected with HIV, the use of highly active antiretroviral treatment (also called HAART) can help keep the infection from progressing to AIDS. This lowers the risk of long-term HPV infection, which might help lower the risk of anal cancer. Not smoking Stopping smoking lowers the risk of many types of cancer, including anal cancer. How is anal cancer found? Many anal cancers can be found early. Early anal cancers often have signs and symptoms (described below) that lead people to see a doctor. Sometimes anal cancer does not cause any symptoms at all. But anal cancers form in a part of the body that the doctor can see and reach easily, so a rectal exam will still find some cases early. For this exam (called a DRE), the doctor puts a gloved finger into the

7 anus to feel for lumps or growths. A rectal exam may be used to check for prostate cancer in men. For women, the rectal exam is done as part of the pelvic exam. Sometimes a doctor will find anal cancer during a minor procedure, such as removing a hemorrhoid. Screening for anal cancer in people at high risk Looking for a disease like cancer in someone with no symptoms is called screening. It can sometimes find cancer at an early stage, when treatment is likely to be most helpful. Anal cancer is not common in the United States, so doctors don t advise screening everyone for anal cancer. Still, some people at increased risk for anal cancer might be helped by screening. This includes: Men who have sex with men Women who have had cervical cancer or vulvar cancer Anyone who is HIV-positive Anyone who has had an organ transplant Some experts also advise screening for anyone with a history of anal warts. For these people, some experts recommend screening with regular DREs and anal Pap tests. For this test, the anal lining is swabbed, and cells that come off on the swab are looked at under the microscope. The anal Pap test has not been studied enough to know how often it should be done, or even exactly which groups of people can be helped by it. Signs and symptoms of anal cancer Some anal cancers cause no symptoms at all. But people who do have symptoms of anal cancer may notice one or more of the following: Bleeding or itching around the anus A lump at the anal opening Pain in the anal area Narrowing of stool or other changes in bowel movements Swollen lymph nodes in the anal or groin area Abnormal discharge from the anus

8 These symptoms can also be caused by something other than cancer, but only your doctor can tell for sure. Talk to your doctor right away if you notice any of these problems. Medical history and physical exam If you have symptoms that might be caused by anal cancer, your doctor will ask about your medical history to check for possible risk factors and to learn more about your symptoms. Your doctor will also check you for possible signs of anal cancer or other health problems. He or she will probably do a rectal exam. Tests for anal cancer If anything abnormal is found during your exam, your doctor might do other exams or tests to help find the problem. If you are being seen by your primary care doctor, you might be referred to a proctologist (a doctor who treats diseases of the colon, rectum, and anus) for further tests. Endoscopy Endoscopy is the use of a tube with a lens or tiny video camera on the end (called a scope) to look inside the body. Endoscopy may be used to look for the cause of anal symptoms. It can also be used to get biopsy samples from inside the anus (described below). For these tests you either lie on your side on an examining table, with your knees bent up to your chest, or you bend forward over the table. Anoscopy: For this test, the doctor coats the anoscope (a hollow tube about 4 inches long) with a lubricant and then gently pushes it into the anus and rectum. By shining a light into this tube, the doctor has a clear view of the lining of the lower rectum and anus and sometimes the lower part of the colon. This exam is usually not painful. Rigid proctosigmoidoscopy: The rigid proctosigmoidoscope is similar to an anoscope, except that it is about 10 inches long, so it lets the doctor see the rectum as well as the lower part of the colon. You will most likely need to take laxatives or have an enema before the test to make sure your bowels are empty. Biopsy In order to find out if a growth is cancer, a biopsy must be done. For a biopsy, the doctor removes a sample of tissue and sends it to a lab to be looked at under a microscope. For anal cancer, this tissue sample is most often removed during endoscopy. If the tumor is very small and has not grown below the surface of the anus, your doctor may be able to take out the whole tumor during the biopsy.

9 Biopsies to check for cancer spread to nearby lymph nodes Anal cancer sometimes spreads to nearby lymph nodes (bean-sized collections of immune system cells). Swollen lymph nodes in the groin can be a sign of spreading anal cancer. Most often, though, they are a sign of infection. Fine-needle aspiration (FNA) biopsy: For this test, a small (fine), hollow needle is placed into the swollen node to remove some cells and fluid that is then sent to the lab. If cancer is found in a lymph node, an operation to remove the nearby lymph nodes may then be done. Sentinel lymph node biopsy (SLNB): If anal cancer has already been found, this test might be used to help see if the cancer has spread to the lymph nodes. In this test, a radioactive substance, often with a blue dye, is injected around the tumor. The dye will move into the nodes that carry fluid away from the tumor. These would be the nodes that any cancer cells leaving the tumor would have spread to first. These nodes are removed and examined to see if they contain cancer cells. This helps tell how far the cancer may have spread. While this test has been shown to be useful for some other cancers, it s not yet clear how helpful it is for anal cancer. Imaging tests Imaging tests create pictures of the inside of your body. They might be done for a number of reasons, including: To help find areas of cancer To learn how far cancer has spread To help tell if treatment is working To look for signs of cancer coming back after treatment Some of these imaging tests are used more often than others. Ultrasound Ultrasound uses sound waves to make pictures of the inside of the body. This test can be used to see how deep the cancer has grown into the tissues around the anus. For anal cancer, a probe must be placed in the rectum, which can be slightly uncomfortable but should not be painful.

10 CT scan (computed tomography) A CT scan use x-rays to make detailed images of your body. This is a common test for people with anal cancer. It can help tell whether the cancer has spread to nearby lymph nodes or to distant organs such as the liver or lungs. The CT scan machine moves around you and uses x-rays to take many pictures of the body. A computer then combines them to make pictures of cross-sections of the body. A CT scanner has been described as a large donut, with a narrow table that slides in and out of the middle hole. You will need to lie still on the table while the scan is being done. Before any pictures are taken, you may be asked to drink a liquid called oral contrast. If you are having any trouble swallowing, tell your doctor before the scan. You may also get an IV (intravenous) line for a different kind of contrast dye. Some people are allergic to the contrast. Be sure to tell your doctor if you have any allergies or have ever had such a reaction. CT scans can also be used to guide a biopsy needle into a tumor. MRI (magnetic resonance imaging) MRI uses radio waves and strong magnets instead of x-rays to make detailed pictures. This test is sometimes used to see if nearby lymph nodes are enlarged, which might be a sign the cancer has spread there. MRI scans take longer than CT scans, often up to an hour. Also, you have to lie inside a narrow, tube-like machine, which upsets some people. Special, more open MRI machines can sometimes help with this if needed. Chest x-ray This test might be done to see whether the anal cancer has spread to the lungs. It isn t needed if a CT scan of the chest is done. PET scan (positron emission tomography) For a PET scan, a special radioactive chemical (called a radiotracer) is put into a vein. Cancer cells quickly take up the tracer. Then a scanner can spot those areas. PET scans look for cancer in the whole body. They are useful when the doctor thinks the cancer might have spread but doesn t know where. Special machines combine a PET scan with a CT scan. For more on scans and x-rays, see our document Imaging (Radiology) Tests.

11 How is anal cancer staged? The stage of a cancer is a standard way for doctors to sum up how far the cancer has spread. This is very important because your treatment and the outlook for your recovery depend on the stage of your cancer. Anal cancer is staged based on the results of exams and tests described in the section How is anal cancer found? A staging system is a standard way for the cancer care team to describe the extent of the cancer. The most common staging system for anal cancer is the AJCC staging system, also known as the TNM system. It uses 3 key pieces of information: T describes the size of the main tumor and if it has grown into nearby structures. N describes spread to nearby lymph nodes. M tells whether the cancer has spread (metastasized) to other parts of the body. The T, N, and M categories are combined to get an overall stage, using 0 and the Roman numerals I through IV (1-4). The lower the number, the less the cancer has spread. A higher number, such as stage IV (4), means a more advanced cancer. If you have anal cancer, ask your doctor to explain its stage in a way that you understand. This can help you take a more active role in making informed decisions about your treatment. How is anal cancer treated? About treatment After the cancer is found and staged, your cancer care team will discuss treatment options with you. Your treatment will depend on many things. The place, type, and stage of the tumor are important. Your age, health, and personal wishes are also taken into account.

12 The main types of treatment for anal cancer are: Surgery Radiation therapy Chemotherapy (chemo) Often the best approach uses 2 or more of these. In the past, surgery was the only way to cure anal cancer, but now most anal cancers are treated instead with both radiation and chemo, This treatment approach, called chemoradiotherapy (or chemoradiation), often does away with the need for surgery. The goal of treatment may be to cure the cancer. If that s not possible, the goal may be to keep the tumor from spreading or to keep it from coming back for as long as possible. Another goal may be to relieve symptoms such as pain or bleeding. Often, an important part of the plan is to try to treat the cancer without affecting your being able to control your bowel movements. Based on your treatment options, you might have different types of doctors on your treatment team. These doctors could include: A radiation oncologist: a doctor who treats cancer with radiation therapy A medical oncologist: a doctor who treats cancer with medicines such as chemotherapy A surgical oncologist (oncologic surgeon): a doctor who uses surgery to treat cancer A colorectal surgeon (proctologist): a doctor who uses surgery to treat diseases of the colon, rectum, and anus You might have many other specialists on your treatment team as well. See Health Professionals Associated With Cancer Care for more on this. It s important to discuss all of your treatment options, their goals and likely side effects, with your doctors to help choose the plan that best fits your needs. It s also very important to ask questions if there is anything you re not sure about. You can find some good questions to ask in the section What are some questions I can ask my doctor about anal cancer? If time allows, it s often a good idea to get a second opinion. This can give you more information and help you feel confident about the treatment plan you choose. Thinking about taking part in a clinical trial Clinical trials are carefully controlled research studies that are done to get a closer look at promising new treatments or procedures. Clinical trials are one way to get state-of-the art

13 cancer treatment. In some cases they may be the only way to get access to newer treatments. They are also the best way for doctors to learn better methods to treat cancer. Still, they are not right for everyone. If you would like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials. You can also call our clinical trials matching service at for a list of studies that meet your medical needs, or see Clinical Trials to learn more. Considering complementary and alternative methods You may hear about alternative or complementary methods that your doctor hasn t mentioned to treat your cancer or relieve symptoms. These methods can include vitamins, herbs, and special diets, or other methods such as acupuncture or massage, to name a few. Complementary methods refer to treatments that are used along with your regular medical care. Alternative treatments are used instead of a doctor s medical treatment. Although some of these methods might be helpful in relieving symptoms or helping you feel better, many have not been proven to work. Some might even be dangerous. Be sure to talk to your cancer care team about any method you are thinking about using. They can help you learn what is known (or not known) about the method, which can help you make an informed decision. See Complementary and Alternative Medicine to learn more. Help getting through cancer treatment Your cancer care team will be your first source of information and support, but there are other resources for help when you need it. Hospital- or clinic-based support services are an important part of your care. These might include nursing or social work services, financial aid, nutritional advice, rehab, or spiritual help. The American Cancer Society also has programs and services including rides to treatment, lodging, support groups, and more to help you get through treatment. Call our National Cancer Information Center at and speak with one of our trained specialists on call 24 hours a day, every day. The treatment information given here is not official policy of the American Cancer Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor. Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don't hesitate to ask him or her questions about your treatment options.

14 Surgery for anal cancer Surgery is not usually the first option for most people with anal cancer. In people who do need surgery, the kind of operation depends on the type and place of the tumor. Local resection A local resection may be done if the cancer has not spread to nearby tissues or lymph nodes. In this operation, only the tumor and a small area of tissue around the tumor are removed. In most cases the muscle that opens and closes the anus (called the sphincter muscle) is saved. If so, you will be able to have bowel movements as usual afterwards. Abdominoperineal resection (APR) This extensive surgery is rarely used as the first treatment, but it is sometimes an option if other treatments don t get rid of the cancer. For this surgery, the doctor makes a cut through the belly (abdomen) and another around the anus. Then the anus and part of the rectum are removed, sometimes along with nearby lymph nodes. After an APR you will need to have a new opening made in your lower belly (abdomen) to let stool leave the body. The end of the colon is attached to a small opening in the abdomen called a colostomy. Stool passes through this opening into a bag attached outside the body. For more about colostomies, see our document Colostomy: A Guide. Risks and side effects of surgery The possible side effects of surgery depend on many factors, including the extent of the operation and the person s health before surgery. Most people have at least some pain after the operation, but usually it can be controlled with medicines if needed. Other problems can include reactions to anesthesia, damage to nearby organs during the surgery, bleeding, blood clots in the legs, and skin infections where incisions were made. After an APR, you might get scar tissue (called adhesions) in the belly that can cause organs or tissues to stick together. This can sometimes cause pain or problems with food moving through the bowels, which can lead to problems like bloating, changes in bowel habits, or nausea and vomiting. As noted above, people need a colostomy after an APR. This can take some time to get used to and may require some lifestyle changes. If you are a man, an APR may stop your erections or orgasms, or your pleasure at orgasm may be less intense. An APR can also damage the nerves that control ejaculation, leading to dry orgasms (orgasms without semen). If you are a woman, APR usually does not

15 cause a loss of sexual function, but adhesions (scar tissue) can sometimes cause pain during sex. For more on the sexual impact of cancer and its treatment, see our documents Sexuality for the Man With Cancer and Sexuality for the Woman With Cancer. For more about surgery as a cancer treatment, see Understanding Cancer Surgery: A Guide for Patients and Families. Radiation therapy for anal cancer Radiation therapy is treatment with high energy rays (like x-rays) to kill cancer cells or shrink tumors. Radiation can be used: As part of the main treatment (along with chemotherapy) for most anal cancers After surgery if the doctor is concerned that some of the cancer might not have been removed To help treat cancer that has come back in the lymph nodes after treatment To help control advanced cancer or to relieve symptoms it causes There are 2 main forms of radiation therapy: external beam and internal radiation (brachytherapy). External radiation This is the most common way to give radiation for anal cancer. It uses a focused beam of radiation from a machine outside the body. Treatment is often given 5 days a week for about 5 weeks. Each treatment is much like getting a normal x-ray, but the radiation is stronger. The treatment itself lasts only a few minutes, although the setup time getting you into place for treatment usually takes longer. Doctors often use newer techniques that let them give higher doses of radiation to the cancer while reducing the radiation to nearby healthy tissues. Side effects There can be side effects from radiation treatment. These vary based on the part of the body treated and the dose of radiation given. Some common short-term side effects include: Skin changes (like a sunburn) in areas being treated Temporary anal swelling and pain Discomfort during bowel movements

16 Feeling tired Nausea Diarrhea In women, radiation can irritate the vagina. This can lead to discomfort and vaginal discharge. These side effects often improve after radiation stops. Long-term side effects can also occur: Damage to anus can cause scar tissue to form. This can sometimes keep the anal sphincter from working as it should, which could lead to problems with bowel movements. Radiation can weaken the bones of the pelvis or hip, increasing the risk of fractures. Radiation can damage blood vessels that nourish the lining of the rectum, which can lead to the lining of the rectum becoming inflamed (chronic radiation proctitis). This can cause long-term rectal bleeding and pain. Radiation can affect fertility (the ability to have children) in both women and men. (See our documents Fertility and Men With Cancer and Fertility and Women With Cancer.) In women, radiation can lead to vaginal dryness and even a narrowing or shortening of the vagina, which can make sex painful. (See our document Sexuality for the Woman With Cancer.) Radiation to the lymph nodes in the groin can cause swelling in the legs, called lymphedema. (For more, see our document Understanding Lymphedema: For Cancers Other Than Breast Cancer.) Internal radiation (brachytherapy) In this treatment, small sources of radiation are put inside the body, in or near the tumor. This can be done using permanent radioactive pellets, or seeds, which stay in the body and release their dose slowly over time, or with other techniques where the radioactive source is placed in the body for only a brief period. Fewer trips to the doctor are needed with this treatment. This approach is used less often than external radiation. When it is used, it is usually given along with external radiation. The possible side effects are often like those seen with external radiation.

17 For more on radiation as a treatment for cancer, see the Radiation Therapy section of our website, or our document Understanding Radiation Therapy: A Guide for Patients and Families. Chemotherapy for anal cancer Chemotherapy (chemo) is the use of drugs to treat cancer. Some drugs can be swallowed in pill form, while others need to be put into a vein or muscle. Once the drugs enter the bloodstream, they spread throughout the body to reach and destroy the cancer cells. For anal cancer, chemo can be given: Along with radiation therapy (known as chemoradiation) as the first treatment for most anal cancers. This can often cure the cancer without the need for surgery. Along with radiation after surgery to try to destroy any cancer cells that were left behind because they were too small to see. This can lower the chance of the cancer coming back. If anal cancer has spread to distant parts of the body, such as the liver or lungs. This can help keep the cancer under control or relieve symptoms it is causing. Often 2 or more drugs are used together because one drug can boost the power of the other. Side effects of chemo Chemo drugs kill cancer cells, but they also damage some normal cells, causing side effects. These depend on the type of drug, how much you get, and how long you take it. Common side effects of chemotherapy can include: Nausea and vomiting Loss of appetite Hair loss Diarrhea Mouth sores Easy bruising (from a shortage of blood platelets) Feeling very tired or short of breath (from a shortage of red blood cells) Increased chance of infection (from a shortage of white blood cells)

18 Some chemo drugs can cause other, less common side effects. For example, some drugs can damage nerves. This can lead to problems with numbness, tingling, or pain in the hands and feet. Most side effects go away when treatment is over. Talk with your doctor or nurse about side effects, as there are often ways to help. To learn more, see our document A Guide to Chemotherapy. Treating recurrent anal cancer Cancer is called recurrent when it come backs after treatment. It can come back in or near the same place it started (local) or spread to organs such as the lungs or bone (distant). If your cancer returns in the anus or nearby lymph nodes after treatment, your treatment depends on what treatment you had the first time. For instance, if you had surgery alone, you may now get radiation and chemotherapy (chemo). If you first had chemoradiation, then you can be treated with surgery and/or chemo. Treating cancer that comes back in or near the anus often involves an abdominoperineal resection (APR). Again, clinical trials may be an option for people with recurrent anal cancer. In some people, the cancer will come back in distant sites or organs in the body. The most common places are the liver and the lungs. The main treatment for this is chemo, but in rare cases surgery to remove the cancer might be an option. Chemo may not cure the cancer, but it may help to reduce any symptoms from the disease. What are some questions I can ask my doctor about anal cancer? As you cope with cancer and its treatment, you need to have honest, open talks with your doctor. You should feel free to ask any question, no matter how small it might seem. Here are some questions you might want to ask. Be sure to add your own questions as you think of them. Will you please write down the type of anal cancer I have? Has my cancer spread beyond where it started? What is the stage of my cancer, and what does that mean? Do I need other tests before we can decide on treatment? Do I need to see other doctors? How often have you treated this type of cancer? Should I get a second opinion? Can you recommend a doctor or cancer center?

19 What are my treatment choices? What treatment do you recommend and why? What is the goal of each treatment? What are the chances my cancer can be cured with these options? What risks or side effects can I expect? How long are they likely to last? Will I need a colostomy? How soon after treatment can I return to my normal activities, such as work, school, exercise, or sex? How soon do I need to start treatment? What should I do to be ready for treatment? How long will treatment last? What will it be like? Where will it be done? How soon after treatment starts will we know if it s working? What will we do if the treatment doesn t work or if the cancer comes back? What type of follow-up will I need after treatment? Where can I find more information and support? Keep in mind that doctors are not the only ones who can give you information. Other health care professionals, such as nurses and social workers, may have the answers to some of your questions. For more about speaking with your health care team, see our document Talking With Your Doctor. Moving on after treatment for anal cancer For some people with anal cancer, treatment can remove or destroy the cancer. Completing treatment can be both stressful and exciting. You might be relieved to finish treatment but find it hard not to worry about the cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer. It could take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document Living with Uncertainty: The Fear of Cancer Recurrence talks more about this. For other people, the cancer might never go away completely. These people may get regular treatments with chemotherapy, radiation, or other treatments to help keep the

20 cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. Our document When Cancer Doesn t Go Away, talks more about this. Follow-up care After your treatment is over, your follow-up appointments are very important. During these visits, your doctors will ask about symptoms, do physical exams, and order blood or imaging tests. Follow-up is needed to watch for treatment side effects and to check for cancer that has come back or spread. Follow-up doctor visits after treatment may be scheduled as often as every 3 months for at least 2 years, and then possibly less often after this. During these visits, your doctor will ask about any symptoms you re having and will do a physical exam. Blood tests and imaging tests such as CT scans may also be ordered. Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can last the rest of your life. Tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them. Use this time to ask your health care team questions and discuss any concerns you might have. It s also very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen. Should your cancer come back, treatment will depend on where it is, what treatments you ve had before, and your overall health. For more on dealing with a recurrence, our document When Your Cancer Comes Back: Cancer Recurrence can help you manage and cope with this phase of your treatment. For patients with colostomies Permanent colostomies are rarely needed now in the treatment of anal cancer. But there are nurses and therapists with special training who can teach you how to take care of your colostomy if you have to have one. Ask the American Cancer Society about programs offering information and support in your area. For more on colostomies, see our document Colostomy: A Guide. Seeing a new doctor At some point after your cancer is found and treated, you might find yourself seeing a new doctor who does not know about your cancer. It s important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details during and soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy, and always keep copies for yourself:

21 A copy of your pathology report from any biopsy or surgery If you had surgery, a copy of your operative report If you stayed in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home If you had radiation treatment, a copy of the treatment summary If you had chemotherapy (or other drugs), a list of your drugs, drug doses, and when you took them Copies of your imaging tests (these can be put onto a DVD, etc.) The names and contact information of the doctors who treated your cancer Lifestyle changes after treatment for anal cancer You can t change the fact that you ve had cancer. What you can change is how you live the rest of your life making choices to help you stay healthy and feel as well as you can. This can be a time to look at your life in new ways. Maybe you re thinking about how to improve your health over the long term. Some people even start during cancer treatment. Make healthier choices For many people, finding out they have cancer helps them focus on their health in ways they may not have thought much about in the past. Are there things you could do that might make you healthier? Maybe you could try to eat better or get more exercise. Maybe you could cut down on alcohol, or give up tobacco. Even things like keeping your stress level under control may help. Now is a good time to think about making changes that can have good effects for the rest of your life. You will feel better and you will also be healthier. You can start by working on those things that worry you most. Get help with those that are harder for you. For instance, if you are thinking about quitting smoking and need help, call the American Cancer Society for information and support at Eating better Eating right can be hard for anyone, but it can get even tougher during and after cancer treatment. Treatment may change your sense of taste. Nausea can be a problem. You may not feel like eating and lose weight when you don t want to. Or you may have gained weight that you can t seem to lose. All of these things can be very frustrating. If treatment causes weight changes or eating or taste problems, do the best you can and keep in mind that these problems usually get better over time. You may find it helps to

22 eat small portions every 2 to 3 hours until you feel better. You may also want to ask your cancer team about seeing a dietitian, an expert in nutrition who can give you ideas on how to deal with these treatment side effects. One of the best things you can do after cancer treatment is to start healthy eating habits. You may be surprised at the long-term benefits of some simple changes, like increasing the variety of healthy foods you eat. Getting to and staying at a healthy weight, eating a healthy diet, and limiting your alcohol intake may lower your risk for a number of types of cancer, as well as having many other health benefits. To learn more, see our document Nutrition and Physical Activity During and After Cancer Treatment: Answers to Common Questions. Rest, fatigue, and exercise Feeling tired (fatigue) is a very common problem during and after cancer treatment. This is not a normal type of tiredness but a bone-weary exhaustion that often doesn t get better with rest. For some people, fatigue lasts a long time after treatment and can keep them from staying active. But exercise can actually help reduce fatigue and the sense of depression that sometimes comes with feeling so tired. If you are very tired, though, you will need to balance activity with rest. It s OK to rest when you need to. To learn more about fatigue, please see our document Fatigue in People With Cancer. If you were very ill or weren t able to do much during treatment, it s normal that your fitness, staying power, and muscle strength declined. You need to find an exercise plan that fits your own needs. Talk with your health care team before starting. Get their input on your exercise plans. Then try to get an exercise buddy so that you re not doing it alone. Exercise can improve your physical and emotional health. It improves your heart fitness. It can help you get to and stay at a healthy weight. It makes your muscles stronger. It reduces fatigue. It can help lower anxiety and depression. It can help you feel happier. It can help you feel better about yourself.

23 In the long run, we know that getting regular physical activity can help lower the risk of some cancers, as well as having other health benefits. Can I lower the risk of my anal cancer progressing or coming back? Most people want to know if they can do things to reduce their risk of the cancer progressing or coming back. Unfortunately, for most cancers there isn t much solid evidence to guide people. This doesn t mean that nothing will help it s just that for the most part this is an area that hasn t been well studied. Not enough is known about anal cancer to say for sure if there are things you can do that will help. Tobacco use clearly has been linked to anal cancer, so not smoking may help reduce your risk. We don t know for sure if this will help, but we do know that it can help improve your appetite and overall health. It can also reduce your chance of developing other types of cancer. If you want to quit smoking and need help, call your American Cancer Society at , or read our Guide to Quitting Smoking. For people infected with HIV, it s very important to do what you can to keep your immune system healthy and to limit your risk of infections. This includes being sure to take your medicines regularly. Talk with your doctor about getting vaccines and other steps you can take to help prevent infections. Other healthy behaviors such as eating well, being active, and staying at a healthy weight might help as well, but no one knows for sure. But we do know that these types of changes can be good for your health in ways that can extend beyond your risk of cancer. So far, no dietary supplements have been shown to clearly help lower the risk of anal cancer progressing or coming back. Again, this doesn t mean that none will help, but it s important to know that none have been proven to do so. How might having anal cancer affect your emotional health? During and after treatment, you may be surprised by the flood of emotions you go through. This happens to a lot of people. You may find that you think about the effect of your cancer on things like your family, friends, and career. Money may be a concern as the medical bills pile up. Or you may take a new look at your relationships with those around you. Unexpected issues may also cause concern for instance, as you get better and need fewer doctor visits, you will see your health care team less often. This can be hard for some people. This is a good time to look for emotional and social support. You need people you can turn to. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or private counselors.

24 The cancer journey can feel very lonely. You don t need to go it alone. Your friends and family may feel shut out if you decide not to include them. Let them in and let in anyone else who you feel may help. If you aren t sure who can help, call your American Cancer Society at and we can put you in touch with a group or resource that may work for you. You can also read our document Distress in People with Cancer or see the Emotional Side Effects section of our website for more information. If treatment for anal cancer stops working When a person has had many different treatments and the cancer has not been cured, over time even newer treatments might no longer be helpful. At this time you may have to weigh the possible benefits of trying a new treatment against the downsides, like treatment side effects and clinic visits. This is likely to be the hardest time in your battle with cancer when you have tried everything within reason and it s just not working anymore. Your doctor might offer you new treatment, but you will need to talk about whether the treatment is likely to improve your health or change your outlook for survival. No matter what you decide to do, it is important for you to feel as good as possible. Make sure you are asking for and getting treatment for pain, nausea, or any other problems you may have. This type of treatment is called palliative treatment. It helps relieve symptoms but is not meant to cure the cancer. At some point you may want to think about hospice care. Most of the time, this is given at home. Your cancer may be causing symptoms or problems that need to be treated. Hospice focuses on your comfort. You should know that having hospice care doesn t mean you can t have treatment for the problems caused by your cancer or other health issues. It just means that the purpose of your care is to help you live life as fully as possible and to feel as well as you can. You can learn more about this in our document Hospice Care. Staying hopeful is important, too. Your hope for a cure may not be as bright, but there is still hope for good times with family and friends times that are filled with joy and meaning. Pausing at this time in your cancer treatment gives you a chance to focus on the most important things in your life. Now is the time to do some things you ve always wanted to do and to stop doing the things you no longer want to do. Though the cancer may be beyond your control, there are still choices you can make. You can learn more about the changes that occur when treatment stops working, and about planning ahead for yourself and your family, in our documents Advance Directives and Nearing the End of Life.

25 What s new in anal cancer research? Research about anal cancer is now going on in many places around the world. Every year, scientists find out more about what causes the disease, how to prevent it, and how to better treat it. Causes and prevention Research has shown that the human papilloma virus (HPV) is a major cause of anal cancer. Researchers are learning how HPV affects anal cells to cause them to become cancer. It is hoped that this knowledge will help scientists find new drugs to fight this disease. Finding anal cancer early Research is focused on the value of screening tests for anal cancer, especially in people with major risk factors. A test called the anal Pap test allows doctors to look at cells from the lining of the anus under a microscope. Some doctors are already using this test for people at high risk for anal cancer, and it might prove useful in finding cell changes before they become anal cancer. Treatment Better treatments are also being studied. Doctors are learning how to focus radiation beams more exactly. They are also looking at whether it works better to use 2 types of radiation at the same time. Using radiation along with chemotherapy has been found to reduce the number of people who need surgery for anal cancer. Different chemotherapy treatments are being studied. Newer targeted drugs, which work differently from standard chemo drugs, are also being studied. Doctors are also looking at ways to improve surgery and its side effects. For instance, studies are now looking at using a man-made bowel sphincter in some people who have had a certain type of surgery. The hope is that this might allow people to avoid the need for a colostomy. Studies are also looking at using a cream (imiquimod) to treat anal pre-cancers. Imiquimod works by boosting the body s immune response. It is sometimes used as a treatment for anal and genital warts, but has also shown promising in treating these precancers.

26 The HPV vaccines in use at this time help prevent HPV infection, but they do not treat infections already present. Doctors are working on vaccines to treat those who already have HPV infections by causing their body s immune system cells to attack the HPVinfected cells. A goal of this research is to help the immune system attack pre-cancers and even cancers that contain HPV. More information about anal cancer From your American Cancer Society We have a lot more information that you might find helpful. Explore or call our National Cancer Information Center toll-free number, We re here to help you any time, day or night. National organizations and websites* Along with the American Cancer Society, other sources of information and support include: National Cancer Institute Toll-free number: CANCER ( ); TTY: Website: Offers a wide variety of free, accurate, up-to-date information about cancer to patients, their families, and the general public; also can help people find clinical trials in their area National Coalition for Cancer Survivorship Toll-free number: NCCS-YES ( ) for some publications and Cancer Survivor Toolbox orders Website: Has publications on many cancer-related topics; also offers the Cancer Survival Toolbox a free program that teaches skills that can help people with cancer meet the challenges of their illness *Inclusion on this list does not imply endorsement by the American Cancer Society. No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at or visit Last Medical Review: 6/10/2014 Last Revised: 1/20/ Copyright American Cancer Society