Coping With Esophageal Cancer

Coping with esophageal cancer and living your best life can be challenging in many ways. Physically, problems with swallowing and weight loss often need attention. Emotionally, you may experience moments of anger, disbelief, and frustration. Life changes socially for almost everyone who faces cancer as family roles change and some friendships deepen while others fall away.

That said, there are a number of tools that can help with coping and receiving the support you need as you face this disease.

Emotional

Whether you have an early stage esophageal cancer or an advanced metastatic tumor, receiving the diagnosis is the same. It's a shock that turns your life upside down. Many people comment that they start to look at their lives as "BC" and "AC," referring to "before cancer" and "after cancer."

That doesn't mean that you won't have times of joy, and even a sense of gratitude and appreciation for life you couldn't have imagined before. Whoever made the comment "you have to experience the lows in life to fully appreciate the highs" may have faced something like you are now.

The Array of Emotions

Having one or two people in your life with who you can be genuine and honest can be priceless while coping with cancer.

Cancer is a roller coaster of highs and lows and a full array of emotions. Most of the time these feelings don't occur in any set pattern, and you may go from feeling joyful and optimistic to depressed and overwhelmed, in a day or even a minute. It's completely normal to experience anger, fear, frustration, and resentment. After all, you've just been given a diagnosis that nobody deserves and it isn't fair.

It's important, and actually is honoring yourself, to talk about these feelings with another person. Before doing so, however, think about who you know in your life who is non-judgmental and can just listen. Many people try to "fix" things even if they are things that can't be fixed. But just because a friend doesn't have the solution, doesn't mean you don't want to ventilate your feelings.

Keep in mind that you don't have to have a positive attitude with cancer all the time. While you may hear this comment often, we don't have any studies that tell us that staying positive improves outcomes.

Resources for Coping

Many cancer centers now offer counseling for people with cancer and their loved ones. Not only can this help families communicate and help those living with cancer cope, but some studies have found that it may even impact survival (at least in people with breast cancer).

For those who struggle with seeing a "therapist," you may wish to view it as preventative or as insurance against some of the stressors you will inevitably face in your journey.

Finding Silver Linings

We certainly don't want to discredit the very real challenges and would never suggest a person hold back from expressing the very real fears and anger that cancer brings. But for those who are struggling, it may help to know that research tells us that cancer changes people in good ways as well as the obvious ways you have experienced. Many people with cancer note a new appreciation for life, more compassion for others, more internal strength, and a deepening of good relationships in their life.

If you're finding it hard to find silver linings, some survivors have found that keeping a gratitude journal helps. In the journal you can write down three things that you are thankful for each day. Some days, you may only be able to write, "none of the light bulbs in our house burned out today." Yet, still, many people have found this helpful.

For example, rather than mourning your thinning hair from chemotherapy, perhaps you can enjoy the break from shaving.

Physical

Esophageal cancer is one of the more physically challenging cancers because it interferes with a daily activity that most of us take for granted: eating and swallowing food. A loss of appetite, weight loss, and fatigue are almost universal as well, and can further affect how you feel physically as well as emotionally.

Fortunately, oncologists are now placing much greater emphasis on quality of life during treatment and there is much that can be done. Don't ever hesitate to mention a symptom.

Swallowing Difficulties

By the time esophageal cancer is diagnosed many people have already altered their diet and have eliminated foods such as meats and raw vegetables. Often times, the esophagus narrows at the time of diagnosis, and after surgery. But there are many things that can be done.

Your oncologist may have you work with a speech pathologist to learn how to swallow without choking. She may have you see an oncology nutritionist who can help guide you to foods that you will be best able to tolerate. Pain can be treated with medications.

There are a number of different procedures that can be done to open up the esophagus as well, ranging from radiation therapy and laser treatments to placing a stent and more. If you are having difficulty getting adequate nutrition, she may recommend a feeding tube.

Weight Loss and Loss of Appetite

Weight loss can also be challenging and many people have dropped at least a few pounds by the time they are diagnosed. We are learning that cancer cachexia, a constellation of symptoms that includes weight loss, loss of muscle mass, and loss of appetite, not only reduces quality of life but is an important cause of mortality.

In addition to talking with an oncology nutritionist, your oncologist may recommend supplements. There are also some medications that can be used to improve appetite.

Fatigue

Fatigue is almost universal and can impact emotional well-being as well. You may become frustrated that you can't take part in activities you did previously. Those around you who don't understand the difference between cancer fatigue and normal tiredness may not understand, and this can further add to your frustration. The fatigue that goes with cancer can't be easily eliminated with a good night of sleep.

A few tips that have helped some people cope with cancer fatigue include:

• Learning to ask for and receive help: Accepting help can be difficult if you have always been independent. One way to think about this, however, is to think about those who are offering to help. Loved ones often say one of the hardest things they've faced when a loved one has cancer is the feeling of helplessness. By accepting help, you will not only help yourself, but you will help your loved one cope with that very difficult feeling.
• Prioritizing your day: Plan activities that require the most energy at the time of day when you feel best.
• Getting a moderate amount of exercise: It may sound counterintuitive, but moderate exercise can help with both fatigue and reducing weight loss.
• Pacing yourself: Give yourself permission to take longer to do activities. Taking the time for short periods of rest throughout the day, rather than trying to accomplish too much at one time, is very helpful.

Self-Advocacy in Cancer Care

When you are diagnosed, it's important to learn as much as you can about your cancer. Not only does researching your cancer help you feel more in control of your situation and better able to make decisions, but in some cases has even made a difference in outcomes.

If you are struggling with being your own advocate this may be a role one of your loved ones can fill. Again, loved ones often feel helpless and supporting you by going to appointments, raising questions with your healthcare provider, dealing with insurance issues, and more can often fill a need for your loved one while helping you cope with the disease.

Esophageal Cancer Healthcare Provider Discussion Guide

Get our printable guide for your next healthcare provider's appointment to help you ask the right questions.

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Social

At the same time that we know how isolating a diagnosis of cancer can be, we are learning that social connections are key in maximizing quality of life for people living with cancer. How does a diagnosis of esophageal affect people socially, and what can you do?

Relationship Changes

Relationships can change dramatically. You may find that old friends who you would have expected to be your greatest support suddenly disappear. This does not mean that they are bad people. Not everyone can handle the uncertainty and fear that comes with a diagnosis of cancer.

At the same time, you may find that more distant acquaintances, or even new friends, play a much larger role in your life. If you've found some of the changes heartbreaking, you are not alone.

Within the family your role may also change. Depending on your previous role, this may be one of the harder things you face. If you find yourself upset because you have shifted into the "needy" role, remember that there are often benefits that aren't apparent right away.

Support Communities

Support groups can be priceless in that they offer the chance to talk with others who are facing many similar challenges and are also a way to hear about the latest research on esophageal cancer. Why? Because people living with the disease are very motivated to learn.

Yet not everyone enjoys groups, and there may not be an esophageal support group in your community. Even if there is a general cancer support group, you may not identify with others with different cancers. The fatigue that goes with treatment can also restrict your ability to travel to a meeting.

Fortunately, the internet now offers people a way to connect with others with the same cancer all over the world. You don't have to leave the comfort of your home. There are online support communities (such as Inspire and more) and several Facebook groups designed specifically for those coping with esophageal cancer. If you are a private person, these groups can give you an anonymous way, if you wish, to participate in a community.

Coping With Stigma

Esophageal cancer, like lung cancer, has carried the stigma of being a "smoker's disease" even though the most common form of esophageal cancer today isn't related to smoking at all. Yet, even with squamous cell cancers, nobody should have to deal with the question, "Did you smoke?" and everyone with cancer deserves the same support and care.

But anyone who has an esophagus can get esophageal cancer, whether they've smoked or not.

Practical

It seems like everyone is overwhelmingly busy these days, and that's without cancer. Throwing cancer on top of your to-do list can feel like the last straw on the proverbial camel's back. What are some of these concerns?

Employment

Those who are working at the time of diagnosis have to face not only their cancer but what to do about their job. The treatments for esophageal cancer, especially if you have surgery, often turn managing your cancer into a full-time job.

Before talking to your boss or co-workers, it can be helpful to take a good look at what your options are. The Americans with Disabilities Act does require employers to provide "reasonable accommodations" for those coping with cancer. This may include working remotely, flexibility with work hours, and more. The not-for-profit organization Cancers and Careers offers excellent information and assistance as you navigate what to do as far as work.

Yet, even with accommodations, many people find it impossible to work. Even if you don't yet need it, it's helpful to check on the disability program you have at work or an individual disability program you may have. Applying for Social Security disability is also an option but can take time. Oncology social workers often recommend doing this as soon as you think it may be a necessity.

Financial Concerns

Financial concerns are significant for many facing cancer. Living with the side effects of cancer itself and the treatments for cancer often makes working impossible, while at the same time bills build up.

Purchasing an inexpensive notebook at the time of diagnosis and keeping all of your receipts in one folder can be helpful for keeping track of your medical expenses. This can help as you begin to deal with bills that arise and is essential if you are planning on including medical deductions on your taxes. Tax deductions for people with cancer can include everything from your physician bills to the mileage you travel for treatment.

If you are struggling with the costs of treatment, a social worker at your cancer center may have some suggestions.

Another option is raising some of the money yourself. From Go Fund Me accounts to planning a fundraiser, there are a number of out-of-the-box ideas for coping with the financial turmoil of cancer.

End of Life Concerns

Nobody likes to talk about what may happen if or when treatment stops working and we've learned that these important conversations are often left to the last minute, denying people many of the support and resources they could have received.

Preparing for the end of life is not something anyone wishes to do, but can help ensure that your wishes are honored if your cancer progresses. Coping with terminal cancer is not something anyone can do alone. If you are hesitant to bring up these conversations, keep in mind that your loved ones likely feel the same way and are holding back so as not to get you upset.

For Friends and Family

Few people go through cancer alone and friends and family experience the same range of emotions and many struggles along the way. In some ways, the feeling of helplessness as a caregiver is even more difficult.

Giving Support

There are many ways that you can support a loved one with cancer, but the most important is to simply listen. Many people want to "fix" things, but often times people with cancer just want to be heard.

Remind your loved one often that you are there and you aren't going anywhere.

Getting Support

We talk a lot about how to care for someone with cancer but caring for yourself as a caregiver is every bit as important. It's important to reach out to your own support system.

We also hear a lot about support groups and support communities for people living with cancer. Some cancer organizations, such as CancerCare, are recognizing the needs of caregivers and offer support groups and communities specifically for caregivers.