Living with EC

Once you are diagnosed with EC, it is an event that will forever change your life

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What you do as the patient thereafter is most important — it can literally mean the difference between life and death.   Time should not be wasted.  Doing your research on the internet is helpful but the majority of sites are not authored by experts – be careful.

The following maps out a framework for your “cancer team”, managing responsibilities for work, lifestyle “expectations”, weight loss, the caregiver’s role, and having the right attitude.

CLICK EACH OF THE FOLLOWING TO LEARN MORE:

Your Team

Assembling a “team” of oncologists, perhaps a surgeon, a gastroenterologist and a host of other medical people is enough to stress anybody out. It is important for the patient to be comfortable with their team members. Contrary to popular belief, there are great places to be treated for EC that are not labeled as “prestigious”. DO NOT feel obligated to only the best-known or most popular. Certainly, a patient wants to find doctors who deal with Esophageal Cancer on a regular basis, and there are many cancer centers and teaching hospitals from which to choose.Close

Work Responsibilities

If you were working prior to being diagnosed that will most likely change. Sitting down with your company’s human resources department and discussing your benefits is crucial. Whether it is “paid time off”, your healthcare plan or other related benefits, you need to find out the details before you enter treatment or surgery.Close

Expectations

I wish I could say that living with EC is somewhat “standard” for everybody. But unfortunately that is not the case. Some patients have trouble with certain foods after surgery, while others have no problems whatsoever. The same goes for treatments, doctors and everything else we choose after being diagnosed. What works for one person does not mean that it will work for another. Much of the experience, is a trial and error process. In all cases however, communicating with your doctors is essential.Close

Weight Loss Management

Many people lose a considerable amount of weight during their battle from surgery, chemo, stress or a combination thereof. During this time, it is important to think in terms of caloric intake. Maintaining your current weight (or trying not to lose too much weight) can weigh on you both physically and mentally. Eating meals that are high in calories is recommended. Most likely, you will not be able to eat the same amount of or types of food after surgery as you did prior to diagnosis. Eat what you can, when you can.Close

Role of a Caregiver

Most cancer patients would agree that cancer can take a mental and physical toll on everybody it touches. Let’s face it: it is devastating to hear that YOU have cancer. Your caregiver is as important as any member on your team. If you do not have a caregiver, I strongly urge you to find one. Typically the role is filled by a spouse, relative, friend or co-worker. Somebody has to be there for you when you are having bad days. Trust me: you will have them. Even if you are not having a bad day, you should always take a caregiver or friend with you to doctors office visits or tests. You will be surprised at what information you don’t hear when you compare notes later.Close

With the Right Attitude…

The other key ingredient to your journey is mental attitude. A good mental attitude goes a long way for a successful outcome. Minimizing stress can be achieved in many ways. Try to stay active as possible during your day. Some people workout, whereas others are busy in social or community activities, including religious support. Meditation, yoga, massage and other “tools” should be used whenever possible. If you are feeling well and can take time away for a vacation…then do it! Getting away can be very therapeutic.Close

Try to take your diagnosis one day at a time.

 If today is a bad day, tomorrow may be a good day.  Today you may hear bad news from doctors, but tomorrow may be great news or results.

Always keep in mind, despite what your doctors say: EC IS NOT A DEATH SENTENCE. It is an inconvenience that that you will have to work through, but EC IS BEATABLE.  There are plenty of survivors out there, including Stage IV.

–> If you are interested in meeting survivors, join the EC Community and connect with EC Survivors Club.

–> Once you finished this article, we recommend that you read Information on Nutrition.

 
 
Author: Richard Stienmier, a Medical Doctor, (Pathologist), who has had chemo-radiation followed by an esophagectomy for esophageal adenocarcinoma and has been free of cancer for over eight years.

Editor: Brian Galgay, ECAA Board Member and Esophageal Cancer survivor for 3+ years

Last updated: February 27, 2012 at 14:14 pm

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