Living as an Esophagus Cancer Survivor

For some people with esophagus cancer, treatment can remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. This is a very common concern if you've had cancer.

For other people, the esophagus cancer might never go away completely. Some people may get regular treatments with chemotherapy, radiation therapy, or other treatments to try and help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.

Follow-up care

Even if you have completed treatment, your doctor will still want to watch you closely. It’s very important to go to all your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do exams and lab tests or imaging tests to look for signs of cancer or treatment side effects.

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

It’s very important to report any new symptoms to the doctor right away, especially if they include trouble swallowing or chest pain because this could be from the cancer coming back or late side effects of treatment. Early treatment of these problems can relieve many symptoms and improve your quality of life. New symptoms or problems could also be caused by a new disease or a second cancer.

Doctor visits

To some extent, the frequency of follow up visits and tests will depend on the stage of your cancer, the treatment you received, and the chance of it coming back.

Many doctors recommend follow-up visits with a physical exam (which may include imaging tests, blood tests, and endoscopy) every 3 to 6 months for the first two years after treatment. This is often changed to visits every 6 to 12 months for the next 3 years, and then once a year after that. Some doctors may advise different follow-up schedules.

Survivors of esophageal cancer should also follow the American Cancer Society guidelines for the early detection of cancer, such as those for breast, cervical, lung, and prostate cancer.

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 to look for long-term health effects from your cancer or its treatment
• 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 and possibly lower your chances of the cancer coming back (such diet changes and increasing physical activity).
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Help for common problems

Supportive treatments are aimed at helping to relieve the symptoms of esophagus cancer. In some cases they are used along with other treatments that focus on curing the cancer, but are often used in people with advanced cancer to help improve their quality of life.

Trouble swallowing

Cancer of the esophagus often causes trouble swallowing, which can lead to weight loss and weakness due to poor nutrition. A team of doctors and nutritionists can work with you to provide nutritional supplements and information about your individual nutritional needs during and after treatment. Certain surgeries to treat esophageal cancer can also affect your eating habits and may make gaining weight difficult. Your cancer care team can give you suggestions such as eating small frequent meals, using nutritional supplements, and other advice to help you maintain your weight and nutritional intake. For more information and nutrition tips for during and after cancer treatment, see Nutrition for People With Cancer.

Some people with esophageal cancer treated with surgery or radiation therapy to the esophagus may have later problems with an esophageal stricture (narrowing of the esophagus). This can be helped with procedures to open this area such as placing an esophageal stent or sometimes using esophageal dilatation.

Pain

There are many ways to control pain caused by cancer of the esophagus and its treatment. If you have pain, tell your cancer care team right away, so they can give you quick and effective pain management. For more information, see Cancer Pain.

Nutrition

Eating right can be hard for anyone, but it can get even tougher during and after cancer treatment. This is especially true for cancers of the esophagus. The cancer or its treatment may affect how you swallow or cause other problems. Nausea can be a problem from some treatments. You may not feel like eating and lose weight when you don’t want to.

During treatment: Many people lose weight or have taste problems during treatment. If this happens to you, do the best you can. Eat whatever appeals to you. Eat what you can, when you can. Now is not the time to restrict your diet. You may find it helps to eat small portions every 2 to 3 hours. Try to keep in mind that these problems usually improve over time. You may want to ask your cancer team about seeing a dietitian, an expert in nutrition who can give you ideas on how to optimize your weight and diet during treatment. Some patients may benefit from having a feeding tube put in temporarily while they get treatment.

After treatment: If the stomach was used to replace all or part of the esophagus, the stomach might not be able to hold food for digestion like it did before. Swallowed food passes quickly into the intestine, which can cause diarrhea, sweating, and flushing after eating. This is called dumping syndrome. This may mean you have to change your diet and how you eat. For example, you may need to eat smaller amounts of food more often. Your health care team can help you adjust your diet if you are having problems eating.

For more information on supportive treatments, see Supportive Therapy for Esophageal Cancer.

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 the risk of my esophagus cancer progressing or coming back?

If you have (or have had) esophageal cancer, you probably want to know if there are things you can do (aside from your treatment) that might lower your risk of the cancer growing or coming back, such as getting or staying active, eating a certain type of diet, or taking nutritional supplements.

At this time, not enough is known about esophagus cancer to say for sure if there are things you can do that will be helpful.

It is clear that smoking and drinking alcohol are linked to an increased risk of esophageal cancer. While it’s not clear if smoking can affect esophageal cancer growth or recurrence, it is still helpful to stop smoking to lower your risk of getting other smoking-related cancers. Not smoking and avoiding alcohol can also help improve your appetite and overall health and help you tolerate chemotherapy and radiation better. If you need help quitting smoking, talk to your doctor or call the American Cancer Society at 1-800-227-2345.

Adopting other healthy behaviors such as eating well, getting regular physical activity, and staying at a healthy weight may help as well, 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 cancer.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of esophageal 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 sellers are 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 return at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your health. Surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, or some combination of these might be options. Other types of treatment might also be used to help relieve any symptoms from the cancer. For more information on how recurrent cancer is treated, see Treating Esophageal Cancer by Stage.

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

Getting emotional support

Its normal to feel depressed, anxious, or worried when esophagus 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 treatment

Cancer survivors can be affected by many 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 may develop a new, unrelated cancer later. This is called a second cancer.

Unfortunately, being treated for cancer doesn’t mean you can’t get another cancer. People who have had esophagus cancer can still get the same types of cancers that other people get. In fact, they might be at a higher risk of certain types of cancer, including:

• Cancers of the mouth and throat
• Cancer of the larynx (voice box)
• Lung cancer
• Thyroid cancer
• Small intestine cancer

Men who were treated for esophagus cancer also have an increased risk of stomach cancer.

For people who have had esophageal cancer, most experts don’t recommend any additional testing to look for second cancers unless you have symptoms. People who have been treated for esophageal cancer and have no signs of recurrence, but who smoke, may want to talk with their doctor about if they should be screened for lung cancer.

Can I lower my risk of getting a second cancer?

There are steps you can take to lower your risk and stay as healthy as possible. For example, the most common risk factors for cancer of the esophagus are smoking and alcohol intake, which are also linked to many of the second cancers listed above. Staying away from tobacco products and limiting alcohol may help lower your risk of a second cancer.

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

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

These steps may also lower the risk of some other health problems.

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