Living as an Esophagus Cancer Survivor

For some people with esophagus cancer, treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but yet it's hard not to worry about cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is 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. It has its own type of uncertainty.

Life after esophageal cancer means returning to some familiar things and also making some new choices.

Follow-up care

Even if you have completed treatment, you will likely have follow-up visits with your doctor for many years. 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.

Some treatment side effects might last a long time or 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. Early treatment can relieve many symptoms and improve your quality of life.

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.

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 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 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 
  • Diet and physical activity suggestions 
  • Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care  

Help for trouble swallowing, nutrition, and pain

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

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. This can help you maintain your weight and nutritional intake. For more information and nutrition tips for during and after cancer treatment, see Nutrition for the Person With Cancer During Treatment.

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

For more information on palliative treatments, see Palliative 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. Learn more in Keeping Copies of Important Medical Records.

Lifestyle changes after cancer of the esophagus 

You can’t change the fact that you have 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 a new way. Maybe you’re thinking about how to improve your health over the long term. Some people even start during cancer treatment.

Making healthier choices

For many people, a diagnosis of 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 positive 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 1-800-227-2345.

Eating better

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. All of these things can be very frustrating.

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.

After treatment: Many patients have trouble with reflux after treatment. It may help to stay upright for several hours after eating.

In some patients, the stomach was used to replace all or part of the esophagus. This can mean that the stomach can’t hold food for digestion like it did before. The food that is swallowed quickly passes into the intestine, leading to symptoms of diarrhea, sweating, and flushing after eating. This is called the 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.

To help maintain good health, survivors should also:

  • Achieve and maintain a healthy weight

  • Adopt a physically active lifestyle

  • Consume a healthy diet, with an emphasis on plant foods

  • Limit consumption of alcohol to no more than 1 drink per day for women or 2 per day for men

These steps may also lower the risk of some cancers, as well as having many other health benefits.

For more information, see Nutrition and Physical Activity During and After Cancer Treatment: Answers to Common Questions.

Rest, fatigue, and exercise

Extreme tiredness, called fatigue, is very common in people treated for cancer. This is not a normal 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 make it hard for them to be active and do other things they want to do. But exercise can help reduce fatigue. Studies have shown that patients who follow an exercise program tailored to their personal needs feel better physically and emotionally and can cope better, too.

If you were sick and not very active during treatment, it’s normal for your fitness, endurance, and muscle strength to decline. Any plan for physical activity should fit your own situation. A person who has never exercised will not be able to take on the same amount of exercise as someone who plays tennis twice a week. If you haven’t been active in a few years, you will have to start slowly – maybe just by taking short walks.

Talk with your health care team before starting any exercises. Get their opinion about your exercise plans. Then, try to find an exercise buddy so you’re not doing it alone. Having family or friends involved when starting a new activity program can give you that extra boost of support to keep you going when the push just isn’t there.

If you are very tired, you will need to learn to balance activity with rest. It’s OK to rest when you need to. Sometimes it’s really hard for people to allow themselves to rest when they are used to working all day or taking care of a household, but this is not the time to push yourself too hard. Listen to your body and rest when you need to. (For more information on dealing with fatigue, see Cancer-related Fatigue and Anemia in People With Cancer.)

Keep in mind exercise can improve your physical and emotional health.

  • It improves your cardiovascular (heart and circulation) fitness.
  • Along with a good diet, it will help you get to and stay at a healthy weight.
  • It makes your muscles stronger.
  • It reduces fatigue and helps you have more energy.
  • It can help lower anxiety and depression.
  • It can make you feel happier.
  • It helps you feel better about yourself.

And long term, we know that getting regular physical activity plays a role in helping to lower the risk of some cancers, as well as having other health benefits.

How might having esophagus cancer affect your emotional health? 

During and after treatment, you may find yourself overcome with many different emotions. This happens to a lot of people.

You may find yourself thinking about death and dying. Or maybe you’re more aware of the effect the cancer has on your family, friends, and career. You may take a new look at your relationships with those around you. Unexpected issues may also cause concern. For instance, you might be stressed by financial concerns resulting from your treatment. You might also see your health care team less often after treatment and have more time on your hands. These changes can make some people anxious.

Almost everyone who is going through or has been through cancer can benefit from getting some type of support. You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or one-on-one counselors. What’s best for you depends on your situation and personality. Some people feel safe in peer-support groups or education groups. Others would rather talk in an informal setting, such as church. Others may feel more at ease talking one-on-one with a trusted friend or counselor. Whatever your source of strength or comfort, make sure you have a place to go with your concerns.

The cancer journey can feel very lonely. It’s not necessary or good for you to try to deal with everything on your own. And your friends and family may feel shut out if you do not 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 1-800-227-2345 and we can put you in touch with a group or resource that may work for you. You can also see Coping With Cancer or Life After Cancer for more information.   

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

Most people want to know if there are specific lifestyle changes they can make to reduce their risk of their 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. Most studies have looked at lifestyle changes as ways of preventing cancer in the first place, not slowing it down or preventing it from coming back.

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. Tobacco and alcohol use have clearly been linked to esophagus cancer, so not smoking or drinking may help reduce your risk. We don’t know for certain if this will help, but we do know that it can help improve your appetite and overall health. It can also reduce the chance of developing other types of cancer. If you want to quit smoking and need help, call your 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.

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

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National Cancer Institute. Physician Data Query (PDQ). Esophageal Cancer Treatment. 2017. Accessed at www.cancer.gov/cancertopics/pdq/treatment/esophageal/HealthProfessional on May 6, 2017.

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Last Medical Review: June 14, 2017 Last Revised: June 14, 2017

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