Living as an Anal Cancer Survivor

For many people with anal cancer, treatment can remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but it’s hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For other people, anal cancer may never go away completely. Some people may need to get treatments to try to control the cancer for as long as possible. Learning to live with cancer that doesn't go away can be difficult and very stressful. 

Follow-up care

When you have completed treatment, your doctors will still want to watch you closely. It's very important to go to all of your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do a physical exam, which will include a rectal exam, an exam of the anus, and an exam to see if any nearby lymph nodes are enlarged. Blood tests and imaging tests such as CT scans may also be ordered. These exams and tests are meant to look for signs of the cancer returning or side effects from treatment. 

Almost any cancer treatment can have side effects. Some might only last for a few days or weeks to months, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and to talk about any changes or problems you notice or concerns you have.

Doctor visits and tests

For people with no signs of anal cancer, many doctors recommend follow-up visits (which may include an anoscopy) with physical exams every 3 to 6 months for at least the first 3 years after treatment. CT scans or MRIs are also often done regularly for a certain period of time. These visits may be less often (about every 6 months) for the next several years. Some doctors may advise different follow-up schedules.

Close follow-up is very important in the first several months after chemoradiation treatment, especially if not all of the cancer is gone. Some tumors continue to shrink after chemoradiation, so the doctor will want to watch the cancer closely during this time to see if more treatment might still be needed.

If you have a colostomy

Most people treated for anal cancer don’t need extensive surgery (known as an abdominoperineal resection, or APR). But if you do have an APR, you will need to have a permanent colostomy.

If you have a colostomy, follow-up is important. You might feel worried or isolated from normal activities. A wound, ostomy, continence nurse (WOCN) or enterostomal therapist (a health care professional trained to help people with their colostomies) can teach you how to care for your colostomy. You can also ask the American Cancer Society about programs offering information and support in your area. See our colostomy information to learn more.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Suggestions for things you can do that might improve your health, including possibly lowering your chances of the cancer coming back
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

Keeping health insurance and copies of your medical records

Even after treatment, it’s 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.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment.

Can I lower my risk of the anal cancer progressing or coming back?

If you have (or have had) anal cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of anal cancer or other cancers. Stopping smoking may also help you tolerate treatments like chemotherapy and radiation much better. 

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of anal cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. For more information on how recurrent cancer is treated, see Treatment of Anal Cancer, by Stage.

For more general information on recurrence, you may also want to see Understanding Recurrence.

Getting emotional support

It's normal to feel depressed, anxious, or worried when anal cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.

Second Cancers After Anal Cancer

Cancer survivors can be affected by a number of health problems, but often a major concern is facing cancer again. Cancer that comes back after treatment is called a recurrence. But some cancer survivors develop a new, unrelated cancer later. This is called a second cancer.

Unfortunately, being treated for anal cancer does not mean you cannot get another cancer. People who have had anal cancer can still get the same types of cancers that other people get. In fact, they might be at a higher risk for certain types of cancers.

Survivors of anal cancer can get any type of second cancer, but they have an increased risk of:

• Cancer of the tongue
• Cancer of the tonsil
• Cervical cancer
• Vaginal cancer
• Vulvar cancer
• Lung cancer
• Kaposi sarcoma

People diagnosed with anal cancer before age 50 also have an increased risk of non-Hodgkin lymphoma.

Anal cancer is linked to infection with human papilloma virus (HPV), and many of these cancers (cancers of the tongue, tonsil, cervix, vulva, and vagina) are also linked to HPV infection.

Follow-up after anal cancer treatment

After completing treatment for anal cancer, you should see your doctor regularly to look for any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer.

Survivors of anal cancer should follow the American Cancer Society guidelines for the early detection of cancer, such as those for colorectal, breast, cervical, and prostate cancer. Screening tests can find some cancers early, when they are likely to be easier to treat. For people who have had anal cancer, most experts don’t recommend any additional testing to look for second cancers unless you have symptoms.

Can I lower my risk of getting a second cancer?

Survivors of anal cancer should also stay away from tobacco products. Smoking increases the risk of many cancers and might further increase the risk of many of the second cancers seen after anal cancer.

To help maintain good health, anal cancer survivors should also:

• Get to and stay at a healthy weight
• Keep physically active and limit the time you spend sitting or lying down
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and limits or avoids red and processed meats, sugary drinks, and highly processed foods
• Don't drink alcohol. If you drink, have no more than 1 drink per day for women or 2 per day for men

These steps may also lower the risk of some other cancers.

See Second Cancers for more information about causes of second cancers.