Esophageal Cancer Patient Support

Bart Frazzitta on the importance of esophageal cancer patient support Years ago when people were told they had cancer, they tried not to tell anyone about their diagnosis. They did not expect patient support from anyone outside the immediate family. In fact, they often tried to keep the diagnosis to themselves for as long as possible.  It was viewed as a death sentence.  It was as if they had the plague and a warning sign was posted on their door:  Stay away — cancer patient inside who is going to die.

Seeking patient support was often seen as a sign of weakness.  Newly diagnosed patients would say,  I have cancer and I must have done something wrong to have contracted it. I do not want to talk about it to anyone. Patient support is totally out of the question.

Well I am here to say that, in my case, I wanted the world to know I had esophageal cancer.  I put my journey out front for all to see. By sharing my experience with others, I gained the strength I needed to fight this disease.

My Patient Support System

At the very core of my patient support system was my wife, Ginny. Throughout the chemo, radiation and surgery, she was always there. She would constantly tell me that she had a good feeling about all of this and everything was going to be OK. I can’t tell you how many times those words were my salvation.  My daughters were also an important part of my support. They spoke to their Mom every day about how I was doing and what obstacles I was encountering. I knew they were thinking about me and praying for me.

My chemo and radiation treatments took me into New York City, a 100-mile round-trip each day, for six weeks. I received patient support from Mr.  Anastasio,  Mr. Becker, and Mr. D’Ambrosio, fellow members of the Knights of Columbus Council # 5903. Every Tuesday and Thursday for six weeks, they drove me into the Memorial Sloan Kettering Cancer Center in Manhattan for radiation treatment. On Monday, Wednesday and Friday, Ginny accompanied me while I received chemo in one location and radiation in another.

Every day we returned home to phone messages from people who had called to check on me. It was difficult to keep everyone up to date by phone, so we decided to create an email newsletter to let people know how I was doing.  Once a week I would write an email to my patient support group. It began with about 10 people, but by the time I had completed the six-week chemo and radiation treatment it had grown to 85. We kept it going, even when I was in the hospital for surgery. Ginny took over the newsletter when I was unable to write and  continued to send it out to everyone on the list.

When we began the newsletter, I received many responses that gave me additional strength to stay the course and fight this disease. As the weeks wore on, however, I began to receive fewer and fewer replies. Although the list included family, friends and business associates in the U.S., as well as business partners around the world, I began to wonder if people had lost interest and were no longer following my updates.

We decided to hold a contest as a fun way to engage the people who had become such an important source of strength for me.  We asked those on the email list to come up with a name for the chemo pouch I wore during the six-week treatment. The winning name submitted by my partner in our Australia office was “Cappuchemo.”  The humor was welcome medicine for me, and Ginny sent him cappuccino mugs from Tiffany & Co. as a prize.

Esophageal Cancer Education Foundation Patient Support System

I know how important patient support was on my journey through esophageal cancer. That’s why one of the goals of the Esophageal Cancer Education Foundation (ECEF) is to walk the journey with patients who have esophageal cancer.

Fourteen years have passed since I went through chemo, radiation and surgery, and we still advocate patient support as an important element in a patient’s esophageal cancer journey. ECEF focuses on the patient and provides multiple forms of support for them as they fight this disease.

We have monthly patient support groups that meet by conference call so patients can share issues they are experiencing with other patients. Knowing that there are other people out there just like them provides support and encouragement.

ECEF produced a book, Esophagectomy Post Surgical Guide Questions and Answers, that medical institutions have purchased to give to their patients when they leave the hospital. The book contains helpful answers for patients,  addressing issues they may encounter and how to deal with them.

We also provide patient support with a phone Hot Line for quality of life questions. We tell patients that if they have a medical question, they should call their doctors. But if a quality of life question is what they want to know about, please give us a call.

The support I receive from participants in our conference calls, as well as patients we meet in person at the start their esophageal cancer journey encourages me. And, of course, Ginny and the girls continue to be there for me. I am alive today, in part, because of the important part they played in supporting me as I fought this disease.

 

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Bart Frazzitta is an esophageal cancer survivor and the founder of the Esophageal Cancer Education Foundation (ECEF). Read more of his story here >

 

9 Comments



9 Responses to Esophageal Cancer Patient Support

  1. aharon jimison says:

    I would like to read mare about your story learning to eat and sleep. When I click on the link I go back to the top of your page. My husband had a Trans hiatal esophagostomy over a year ago. He is struggling with both eating and sleeping loosing over 85 pounds. We live in North Carolina. I am looking for help.
    Thank you

    • bart says:

      In response to your email I would certainly like to talk to him. I am an esophageal cancer survivor of 15 years and I have spoken to many esophageal cancer patients. I am sure I can give him some comments to think about. You can reach me at 732-385-7461.

      Bart Frazzitta
      President
      ECEF
      http://www.fightec.org

    • bart says:

      In response to your email I would certainly like to talk to him. I am an esophageal cancer survivor of 15 years and I have spoken to many esophageal cancer patients. I am sure I can give him some comments to think about. You can reach me at 732-385-7461.

      Bart Frazzitta
      President
      ECEF
      http://www.fightec.org

  2. Judy says:

    I think your blog is wonderful. My father was diagnosed with EC last March. he started chemo in April, with no side effects except the loss of a little hair. He started radiation in May, they should have put a feeding tube in him before radiation. He could not eat because the pain was horrible. He lost a lot of weight. I believe the doctors did not plan this out properly, knowing where the radiation was going to be causing irritation and swelling. He was doing great going into surgery and after they removed 2/3 of his esophagus and part of his stomach, he was home in a week! He’s had all of the usual struggles, he has had very bad reflux, but is finding ways to get that under control. He is eating a lot, but not too much, he spreads it out, just like you suggest. However, even with lots of calories going in he is loosing weight, 10 pounds in the last 2-3 weeks. This is scaring me. He is 79 and still works full time, he is exhausted after work. I know he needs to exercise, but why do the doctors not tell him that? Overall he is doing great, but I am worried about the weight loss. he is getting a PET scan tomorrow morning.

    • bart says:

      Judy

      You say he is working full time. What type of work does he do? Exercise is very important but losing weight is a concern since you said he is eating a lot. Lets see what teh scan shows . Let me know

      Bart

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  4. Mary Burgetr says:

    My significant other had an esophagectomy at U of M Feb 7, without prior radiation/chemo. Surgery went well – only in hospital 8 days. He was able to walk several miles 10 days out of surgery and continues to walk every day. 2 out of 21 lymph nodes removed showed signs of cancer, so chemo and radiation will now happen, but we have some questions: 1. What are they targeting with the radiation? 2. Will there be collateral damage to the stretched stomach? 3. They’ve talked about a longer chemo/radiation regimen than what had been considered prior to surgery, why? Hope to hear from others who had chemo/radiation post surgery. As with others, food and weight loss are problems. Working on the 6 meals/day; still finding what works.

    • bart says:

      Hi Mary

      What stage was his cancer. The normal routine is if it is stage 2 or 3 they would do chemo and radiation first and then the surgery. If a lymph node were to biopsy an having cancer they would only do chemo post surgery. I would think they would be radiating the area where his tumor was. Chemo and radiation post-surgery can be a problem from at least a nutrition point of view. I would ask the doctors what they hope to achieve with radiation and what will the side effects be from the radiation and from the chemo post surgery.

      Take Care

      Bart

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