Surviving Esophagectomy Surgery

Bart Frazzitta survived esophagectomy surgery for esophageal cancerThe first phase of my treatment for esophageal cancer required six weeks of simultaneous chemotherapy and radiation treatments. Now I faced esophagectomy surgery to remove the tumor at the junction of my esophagus and stomach. But first, I needed to rest for 8 weeks to allow the radiation to get out of my system. My body needed to be in good condition to survive major surgery.

Emotional Turmoil

My mind was in total chaos. What would be the outcome?  Would I survive and beat this monster, or would I be counting down the remaining days of my life? I was confident in my MSKCC team of doctors, but I knew the chances of surviving esophagectomy surgery were also dependent on me. Having a positive attitude and thinking of the saying “God sits on my right shoulder and there is nothing that he and I together can’t handle” was a constant reminder that I was not in this alone.

Esophagectomy Surgery

My surgery would be a 4-5 hour procedure. First, the surgeon would remove two-thirds of my esophagus and one-third of my stomach. Next he would pull the remainder of my stomach up into my chest and re-attach it to what was left of my esophagus. In the end, the top of my stomach would be positioned in the middle of my chest.

This surgery is called an Ivor Lewis esophagectomy (named after the Welsh surgeon who first described this procedure in 1946.)

The surgery required two large incisions, one running from my belly button to my chest bone, the second from under my right arm to the middle of my back. Although no bones would be broken during the esophagectomy surgery, one lung would be intentionally collapsed so the surgeon could reattach my stomach in its new location.

Waking Up In The Recovery Room

When I woke up in the recovery room, I had a gastric drainage tube coming out of my nose to keep my stomach clear of any matter. I also had chest tubes on each side of my body to keep my chest cavity free of fluids, as well as a urinary catheter.

The plan was for me to stay the first night after esophagectomy surgery in the recovery room, then I would be transferred to the hospital’s Thoracic Floor for the remainder of my hospital stay.

Recovery: Week 1

Within one hour of arriving on the Thoracic Floor, they had me up and walking. They informed me that 14 laps around the floor equaled one mile, and I was expected to do that every day at a minimum.

In addition, they gave me a breathing device called a Spirometer.  Every hour I was expected to do ten reps on the device to see how high I could get the indicator to rise. I’d received a spirometer before entering the hospital, so I knew my pre-surgical lung capacity. Now I placed the indicator at my previous highpoint, and tried each day to see how close I could get. It was a work in progress.

In addition to walking and using the spirometer, I was asked to deliberately cough ten times each hour.  Although it sounds easy, it was the most difficult thing I had to do. When I coughed my stomach vibrated, and the incision I had from belly button to chest bone would jump with pain. I found that holding a pillow tight to my stomach eased the pain and suppressed some of the stomach vibrations.

For seven days I did not eat or drink anything. Each day, the nurse would ask me to rate my pain. The focus of the post-surgical therapy was to reduce my pain to a tolerable level so that I could walk, breathe and cough without too much discomfort.

Recovery: Week 2

At the end of seven days I underwent a barium swallow, a procedure designed to tell if the surgical connection was healing properly. The test confirmed that I did not have any leaks at the new connection between my stomach and esophagus

The positive test results meant that I could be freed from the tubes that were inserted during the esophagectomy surgery. What a relief it was to be rid of all that excess baggage. Walking around the floor was so much easier that I was able to do more than the minimum daily goal of 14 laps around the Thoracic Floor.

Learning to Eat Again

On the seventh day after esophagectomy surgery I also started on a liquid regimen. By the eighth day, I was promoted to a soft mechanical diet which included Jello, puddings and even scrambled eggs. By the ninth day, I was eating off of the menu!

This rapid progression from liquids to solid food is rare today. New protocols are designed to promote fuller healing of the surgical join by keeping esophagectomy surgery patients on a feeding tube or a soft mechanical diet for a longer period of time. But I was grateful to have made such rapid progress that I was able to leave the hospital on the tenth day.

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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 >

184 Comments



184 Responses to Surviving Esophagectomy Surgery

  1. Dolly says:

    Hi Bart, your words are hope. My father is recovering from esophagtomy. But he is too tired to exercise, and too weak emotionally to develop a fighting spirit. I don’t know what to do.

    • bart says:

      What you say your father is going through could be signs of depression. Exercising will hopefully regain his enthusiasm to want to get better. Start slow with the walking and build up to where he is walking a mile 3 times a week. Exercise is very very important. If he continues with what I call a depression you should seek professional help.

      Good luck

      Bart

    • Stacie Bean says:

      Dolly, give it YOUR all. Be there, be supportive and most of all, educate yourself so you can advocate for your father!! I wish I had & am dealing w the guilt. Drs aren’t always right. You know your father. Godspeed

    • Mike Gough - near Toronto CANADA says:

      Thanks so much for this site and the opportunity to comment. My medical issues began as a massive category pulmonary embolism . Not any significant prior warning but serious enough I stayed in hospital for 7 days. The blood thinner Xarelto mitigated problems and further tests went forward. A gastroscopy 10 weeks later revealed the culprit. I had an esophageal adenocarcinoma very near the stomach opening. They did combo chemo and radiation. A 6 hour tumor removal operation and and the Ivor Lewis procedure with two incisions. But part way through a thoughtful oncology nurse gave very good advice. She said “stay positive” throughout, do not curl up and say why me, it’s cancer, I’m doomed. Our medical people are like saints and very thorough. I sort of owe it back to them to stay upbeat and positive. The post surgery coping with the smaller stomach and the loss of the upper closure sphincter has its challenges. During sleep if I lean off the big wedge pillow I have learned what that means. Instant gastric reflux and maybe a wee coughing spell. But hey its great to be here to comment. Things could have gone a lot worse. I^ll need to get more strict on that properly spaced and portioned 6 meal schedule. And yes some of the old stuff I liked eating is just wrong now. I really appreciate your site. There is hope and room for living after the cancer. Remain positive.

      • bart says:

        Hi Mike

        Thank you for your kind words. I couldn’t have said it better. Being positive, not just leading up to the surgery, but being that way for the rest of your life is the way to go.

        I am out of surgery 16 years, and I can say most if not all of what I had eaten before the cancer I can eat now. Maybe not in the same quantity but I can eat it all.

        Mike we need to get this message out to people who have gone through this cancer and the message of awareness for those who are experiencing heartburn but have done nothing about it. We have a You Tube Channel and an awareness video on that Channel https://www.youtube.com/channel/UCDkh7_H9BOnNASdmG4pdF0g Take a look and let me know what you think.

        Take care and stay positive

        Bart

    • Mary LiBrandi says:

      Hi Bart,

      My husband had stage II B. He went through chemo radiation & 8’weeks ago surgery. They did find 1 out of the 12’ lymph’s removed positive.

      Out of the blue the last 11 day he is so nauseas he can’t eat he lost 10lbs in 7 days.

      The prescribed Ondansetron is only taking slight edge off nausea.

      Any suggestions to get past this? Thank you & God Bless you.

      • bart says:

        Hi Mary

        It could be he is not digesting his food fast enough. Is he eating 6 meals day? 2 BK 2 Lunch and 2 dinners. Have him eat very slow. Have him put his folk down between bites. Do not drink with his meal, sips are OK. Drink between meals.

        Do not overeat. Let your scale tell you if you are getting enough calories. If you are losing weight eat more calories but slowly. Stya with a balanced meal to avoid dumping.

        We have support groups that meet by conference call for people who have had an esophagectomy. Take a look at http://www.fightec.org and click on Services.

        Have him consult with his doctor.

        Let me know if any of this works.

        Take care

        Bart

  2. Deb says:

    Thank you so much for taking the time to write these blogs!
    My father; also 57, has just been diagnosed with a stage III; 5cm tumor in partially the same place. Your story has provided such a sense of relief for my family and changed what initially was a very grim diagnosis into a hopeful one! Bless you!
    How are you now?

  3. Deborah says:

    Thank you as well for posting encouraging thoughts of your procedure. My 53 yr old sister has an Ivor Lewis performed tomorrow morning by Dr. Cerfolio at UAB in Birmingham. We are praying Dr. Cerfolio has a restful night sleep tonight.

    • bart says:

      Hi Deborah

      We have a conference call support group if your sister is interested. WE meet once a month with patients who call in from all over the US. If she is interested she could send me a message so I have her email address and I will let her know the call in phone number and code to use for the call. We will keep your sister and you in our prayers

      Bart

  4. Debbie Haas says:

    Dr. Cerfolio is an awesome surgeon, and we know the Lord was sitting on his shoulder as well, as he performed this 6 1/2 hr surgery on my sister, robotically. Approx. 11 hrs after surgery, she was up sitting in a chair, and had to walk 3 times during the eight hrs she had to be out of bed. (carrying *NG tube, Portable Oxygen, IV, 2 chest tubes, J-tube(feeding tube), foley catheter.) she came home one week following surgery. She passed all her swallowing tests and is now approx 4 weeks post op. Just the other night she had fish for dinner. She said it was delicious. She has been able to get out and about and does tire easily. The only Hiccup she has had is an aggravating cough and hoarseness in her voice, and yesterday her J-tube came out. I work in Radiology, so I quickly helped get her in touch with the ones who could help replace her J-tube. She has done marvelous but still has a long road to recovery. We are so thankful to God that all nodes removed were benign. Dr. Cerfolio is a wonderful doctor, as well as his wonderful office staff, and the cardiovascular floor of University of Alabama-Birmingham Hospital is top notch. For this hospital to be SOOO large, the entire process was so very smooth. Highly recommend this hospital and Dr. should anyone ever find themselves in this situation. May God Bless.

    • bart says:

      I am glad to hear that your sister is doing well. Make sure she continues to exercise as I think it will help the healing process. If you are interested you can go to our web site http://www.fightec.org and get a copy of Esophagectomy Post Surgical Guide Questions & Answers. This should help identify any issues she may encounter during her recovery period. Also we offer a conference call support group for all patients and their caregivers who have been through this surgery. If she would like to become a member of this group she need only to send an email to bart@fightec.org.

      Take Care

      Bart

    • Chad says:

      Debbie,

      I live in Tuscaloosa, AL and heard good things here about UAB for this surgery.

      This story of your sister is a true inspiration for me. I would love to learn more if you get this.

      My name is Chad, and I’m 33 years old with Stage II EC at lower junction. 1 week into my Chemo and radiation treatments.

      Thank you! And thank you Bart for speaking with me!

  5. Jack says:

    I just found your site out of desparation. I had the procedure on 5/9/16 and wish I had not survived at this time. I am losing weight and have trouble eating ANYTHING! I will check out your site now and hope for some advice about eating.

    • bart says:

      I enjoyed talking to you the other day. Eat smaller meals 6 times a day. 2 BK,2 lunch, 2 dinners. Don’t drink with your meals because you want to take in as many calories as you can. Drink between meals to get your fluids. Watch your weight. If you are losing weight increase your content at each meal a bit. During the first few months post surgery you want to maintain your weight. after that time if you need to gain weight eat high in calorie food.

  6. Pauline Regner says:

    Hi There I just stumbled on this site. I had a total oesohapgectomy 3 years ago and I vividly remember those early days struggling with eating and it was rough. My workds of advice ar be patient . find things you like and eat small amounts often. Avoid any carbonated drinks and any tamotoe based foods or nuts. a food diary is a good thing to keep track of what makes you feel good and what naauseates you. Eating is so primal that not being able to do it with out such a fuss is very frustrating and exhausting and losing weight makes eating a job and a chore and makes it miserable . dont lose heart it wont be like this forever -it will gradually get better and you will find what works for you . I find walking after eating to release gas works for me . I steer away from tamatoe based foods and never eat desert after a meal -I get too full . I never drink when I eat -It makes me too full . small rules like this and sticking to them will make a difference and help you establish control. I got really depressed after surgery and I started on anti depressants and Im glad I did -it was a turning point for me – so if you continue to feel down -talk to your doctor . stay strong and positive and feel blessed each day !

    • bart says:

      I think what you have said in your email is for the most part correct. I think food is what the person is use to and can handle. I for instance have tomatoes and I have had them through my chemo and radiation and I continue to eat them in all 16 years post surgery. Nuts as well. In fact if I experience dumpling I will have a glass of orange juice and eat a handful of cashews or peanuts. Keeping a food diary is a good idea as it will help when you have a problem the following day to see what you ate previously.

      Overall congratulations and continued success

      Take Care

      Bart

  7. Barb McCombs says:

    My husband had surgery July 28 took them 10-1/2 hours to correct his esophagus, he has sleep apnea so bad he ended up in ICU for 14 , he stayed 17 days total his probably now is when he eats everything goes through him I’m hoping as time goes by it will get better wish he could figure out what to eat

    • bart says:

      Does he have a feeding Tube? When I came home from the surgery, I ate 6 small meals each day. in effect 2 BK, 2 Lunch and 2 dinners. If food is consistently running through him you should talk to your doctor and the nutritionist at the hospital he had his surgery. They should be able to direct him on what to do. Some of the nutrition drinks like boost can cause the problem.

      Bart

  8. Elizabeth Van Akker says:

    I am booked for surgery Sept 27. My tumor is also at the junction of the esophagus and the stomach. My instructions say that after the surgery not to bend at the waist and to sleep at a 30-45 degree angle. Is that for the rest of my life?

    • bart says:

      Sleeping on an angle for the rest of your life is necessary. The reason for that is they remove the valve on top of your stomach during the surgery and they do not have a way of replacing that valve. In effect that valve acts like a lid on your stomach and prevents food from coming up into your throat. That valve has probably weakened over time and allows acid to come up but when its removed there is nothing to keep food and acid in your stomach.

      The law of gravity applies and sleeping on an angel stops the food etc from running up hill to your throat where you could aspirate and bad things can happen when that happens.

      One thing you need to make sure of is that you allow 2-3 hours after eating before going to sleep. This way the food should have been digested and the possibility of it coming up during your sleep is minimized.

      There is a book on our web site that addresses the issues you may encounter post surgery. It is available in the book store. It is Published by Authorhouse or you could order it on our web site. It is called Esophagectomy Post Surgical Guild Q&A.

      Good luck with your surgery.

  9. Taylor Krahl says:

    Just found your site sitting at the hospital waiting for my dad to get out of surgery. We just hit hour 4. Prayers for all going through everything. Glad I found your site – will be back as we go through recovery.

  10. Lauren Skelton says:

    I am interested in the book that you mention. My husband is post surgery which was not due to cancer. If was from a maze treatment gone wrong. He would also be interested in the monthly conference call.

    • bart says:

      The book Esophagectomy Post Surgical Guide Questions & Answers can be obtained at your book store or it can be ordered from our web site http://www.fightec.org. To be part of our conference call support group go to our web site and click on JOIN and click on the individual section and answer the questions. There is one that deals with the support group.

      Talk to you soon

      Bart

  11. Nancy Corbett says:

    I have a family member that had this surgery, now after four weeks, is still in the hospital because of issues of extreme nausea and diarrhea. Quite honestly I think the doctors are puzzled. After a good prognosis from the surgery, things have seemed to go down hill instead of up. I do think depression has played a huge part in her post op state. She does have the feeding tube but refuses to eat she also refuses to talk to someone AV her depression. My fear is that she is giving up. Any help out there?

    • bart says:

      The hospital should have a social worker that should be able to get to her. If she is still on the feeding tube her problem has to be with the liquid they are using to give her the nutrition she needs to maintain her weight. If you can get her up and have her walk in the hospital that will help with her depression.

      I am not a doctor but I think if you have her think about something in her life that is worth living for. A son or grandson or granddaughter graduation or getting married or having grandchildren. She needs to think about a reason to live and you need to focus on that and reinforce it.

      Bart

    • Sharon says:

      Hi Hun, my name is Sharon. I have stage 4 adenocarcinoma of the esophagus. Mine was 74% blocked it still sits at the junction of the esophagus and stomach. Mine by the time discovered was already stage 4 and metastatic. A PET scan revealed it has already spread to both of my lungs, all of the lymph nodes around the tumor and the entire top portion of my stomach. The Fundus. I had targeted radiation to shrink the tumor. I will not do chemotherapy because I also have end stage COPD, and my immune system is seriously compromised because of steroids. I’m not elegible for surgery. What I would give to see my grandkids grow up. Tell your family member that I said get your ass out of bed and go live their life. To do all the things they ever dreamed of doing and some of the things they knew they shouldn’t. They have been given a second chance. Now by now you might be wondering if I’m crazy. Trust me I’m not. I’m floored that someone could be fortunate enough to have the surgery, survive it, and then refuse to take advantage of it. My radiation treatment shrunk the tumor down to a 52% blockage. I am in Palliative care. Which means I’m still dying and the radiation caused a host of other problems. I have radiation induced esophagitis. Meaning I can swallow some foods but even if I can a dang spasm sends the food right back up. I never know from one meal to the next if I’m gonna be nauseous or puking. I can’t be around cooking food and the problem with that is before last June I loved to cook. But even if I do get food down it causes pain when it hits my stomach. If me with all the dang problems that I have, I have yet to admit defeat. I will go out a fighter. I will do EVERYTHING I can do to stay here for my grandkids. Besides I know God isn’t done with me yet. I talk to him, cry out my rage to him, yell at him, but EVERY DAY, I thank him for another day. I tell him challenge accepted Lord. The challenge is to get through another day and maintain my weight. I refuse a stomach tube to be fed. I have my end care treatment in place. No feeding tube, DNR, and limited use of fluids. They didn’t think I’d make it to March 2017. Guess what it is May and I’m still here. Tell your family member that the most exciting time of their life is waiting for them. Go live their life, hell tell them to live mine for me. But please don’t waste what they have been given. A second chance. Sweetie all my love, a whole bunch of prayer, and the extra energy to do what they must. God bless you and your family member. May they be blessed with good fortune. No need to respond to this and I’m sorry ahead of time if I offended anyone.

      • bart says:

        HI Sharon

        There is a saying that someone gave to me in 1973 that says, “Make where you are better because you are there” I think the realization of what you are going through and the positiveness of your thought process is God’s message to you. Thank you for your sharing it with us.

        I often say “our lives are a gift from God and what we do with our lives is our gift to Him”. I only hope they meant to say March 2018.

        Stay positive and our prayers are with you.

        Take care

        Bart

  12. Lauren says:

    Hi! I just stumbled on this site. My husband was diagnosed in July, the crazy thing we are 26 and 33 years old. Upon my husbands diagnosis he was the epitome of health. We are 5 wks out from our last chemo and radiation and next Monday we will go in for his surgery. I would love to have any tips anyone is willing to offer.

    • bart says:

      Hi Lauren

      There is a book called Esophagectomy Post Surgical Guide Questions & Answers that you can get at your local bookstore or through our web site http://www.fightec.org. The publisher is Authorhouse. This book was developed from issues patients experienced post surgery and we provided those questions with the response in most cases from doctors who treat esophageal cancer patients.

      Also if you are interested we have conference call support groups for people who have gone through the surgery. There is no cost involved in this service and all you would have to do is join ECEF at the web site above and click on the support group question. This group meets once a month in the evening for one hour by conference call. Patients from all over the U.S. call in and its good for patient to see they are not on this journey alone.

      Good luck with your husbands surgery

      Take Care

      Bart

      • Joe says:

        Do you know of any other treatments for this type of cancer? Where they use our own cells to fight the cancer?

        • bart says:

          Not sure what you mean by “other treatments”. There are immunotherapy studies that are going on and some institutions are using it in the treatment of esophageal cancer. There are targeted therapy being used where they look into the makeup of the cancer cells and select the chemotherapy that best suits their findings.

          There are holistic methods out there that in some cases sell a bill of goods to people in need while there are others that potentially could be good alternatives.

          • Joe says:

            Do you know of any other treatments for this type of cancer? Where they use our own cells to fight the cancer? Thank you,I guess as Im getting ready to start treatment,1 more test @ roswell then tues. The interview with rafialology my ports in. It still seems hard or weird to me,that until now I’ve been quite healthy,&w/the chemo I’ll be destroying all the strong antibodies I’ve been trying to keep good, it seems the way it works the best is to knock my cells down?while working on keeping good nutrition coming in? Would that in effect hinder the chemo,I’m hoping to keep exerciseing etc. I’ve pretty much tryed eating right for ever somewhat,but since getting this diagnosis I’ve stepped up the eating right & exercise,hoping to help me in this battle? I have the esophogus cancer @ the junction of stomach and esophagus,Monday they will be sending another type of scope into my esophogus & further into my stomach,I’m praying it hasn’t travelEd any further.

          • bart says:

            JOe

            Check with the doctors as they may have a diet for you to follow or some dos and don’ts about eating. Check with them about exercising. I think this is good but it is good to get their take on things. Most places are using targeted therapy, which will protect your good cells to a point. Check with them again as to what chemo they will be using.

            Good luck

  13. Joe says:

    I’m sticking to the course but I want the best out come as we all do

  14. Joe says:

    I hope I’m not making a mistake,but I think my local nyoh in the old Amsterdam mall s going to administer the chemo & radiation ndering the direction of roswell. I’m not sure of a turning point to go & switch completely to roswell? Also the germ thing,as I only have kids & a granddaughter? Also you wife was asking about Lunesta pro kit,what your thoughts on it maybe,you have been a great help through his

    • bart says:

      I think you stay in touch with Roswell and as long as they are in the loop if you need them for more procedures they are there.I don’t know about Lunesta?

  15. Marius Botha says:

    My friend of 43 years has being diagnosed with cancer, the tumour is 44mmx38mmx77mm long. It has spread to his lymph nodes.
    He has gone for his chemo port today and should start his treatment within 7 days.
    He will then recover for 8 weeks before he will undergo the Ivor Lewis Operation.
    Any advise for him please, he is a broken man, he was always very healthy and competitive sportsman.

    • bart says:

      WE offer a book called Esophagectomy Post Surgical Guide Questions & Answers on our web site http://www.fightec.org. This book offers answers to the most frequently asked questions dealing with the recovery from this surgery. We also have conference call support groups available to him post surgery. These groups are made up of patients and caregivers who have gone through the surgery and meet once a month to share their journeys and get answers to questions that they have about issues they are experiencing.

      Your friend needs to be positive about the surgery. He needs to put his mind and spirit into the happening while his body is being taken care of by the surgeon.

      All the best to him

      Bart

  16. Diane Russell says:

    My husband had the surgery 6/11/15 . he had a feeding tube twice. He had a mouth infection & lost 80 pds. We are trying to get to a point where we have it figured out. as soon as we think we do he gets sick.He already had Pneumonia.They had to go back in this may & attach his stomach because it was moving around & twisted. He gets discouraged but I keep after him. It is hard to get used to. I can’t believe there are so many people who have this . Thankyou for your blog.

    • bart says:

      We do have a conference call support group that meets once a month. We get patients and caregivers from all over the US and Canada to attend this one hour meeting. If you would like to participate go to our web site http://www.fightec.org and click on the JOIN button. check individual and say yes to the support group question. Sometimes being involved with other patients will give you both a sense that you are not in this alone. Try it.

      Bart

  17. Joe says:

    It seems as time goes on ,the more questions I Have, it would appear that if all goes according to plan I’ll be finishing up the rest period before surgery in December,you say that operation is
    quite rough,
    I live in the northeast,i suppose I’ll have to get the operation
    when its time any pros or cons from your experience?

    • bart says:

      Joe

      The one thing I can tell you is you need to be positive about the surgery and the post surgical recovery period. We have a book on our web site called “Esophagectomy Post Surgical Guide Q&A.” I suggest you get a copy of this book and become familiar with the possible issues that you may encounter and you will see what the response to that issue is in the book.

      Look at the surgery as a challenge that you want to beat. A strong positive attitude will help

      Good luck

  18. Joe says:

    1st let me say thanks for answering,my questions,& yes I’d like acopy of the book you mentioned,I don’t know how, not real good@ using these phones yet?,I also have a hiatal hernia & its still hard to figure that
    Im going have to get sicker to get better,as Im kee
    Myself in pretty good shape so far,knock on wood- well thanks again

  19. John Barta says:

    I’m having Esophagectomy nov-21 I’m reading100 question book about esophageal cancer you help put out.I beleave if I can just wake up after the operation everything will be all right. Thanks Bart for putting out all the information about this disease.

    • bart says:

      John

      We have another book called “Esophagectomy Post Surgical Guide Questions & Answers”. You can get this book on our web site http://www.fightec.org. Once you get out of the hospital post surgery you can be part of our conference call support group meeting. WE meet once a month in the evening for an hour. The meeting is with patients who have been through the surgery you are about to go through. It is good to talk to other patients and hear their journey’s.

      Good luck with your surgery and let us know how you are doing.

      Take Care

      Bart

  20. Jock,
    Was diagnosed with esophagus cancer stage 3 in april .Made it through chemo and radiation better than I thpught I would. Had my surgery at
    UC sandiego on aug.30.I know now why they wait to have surgery 6 weeks after radiation and chemp,it was tougher than I thought,but by the grace of god my pathology report came back good,I am in remmision today.I am so glad I came across youre blog,it has helped me with all the problems after my surgery.I’m wondering why my doctors did’nt tell me about such resources. I am going to mention this to them,because this should be part of their plan for recovery for everybody that has to go through this journey. Thank you so very much

    • bart says:

      Jock, if you send me the name of your surgeon and his email address I will send him a pamphlet that if he approves can be given to every one of his patients as they leave the hospital. It will tell them about all the services we provide to post surgery patients.

      Take Care

      Bart

  21. John barta says:

    I went threw 5 weeks of chemo an radiation to the end of October. I had my esophagectomy November 21. After 6 days I’m coming home.on the forth day I passed all my swallowing test. Fifth day I was upgraded to have Clear fluids.plus keep active.You just have to have a positive attitude all the nurses says I had that and that’s why I’m going home so fast. Reading all of Bart’s articles help me make my mind up to go through with this he was a very big help

    • bart says:

      John

      You have become my new idol for listening and achieving the positive results you have experienced. Look forward to talking to you in our monthly conference call support meetings. Well done

      Bart

  22. Dennis Terry says:

    I am in my 11th month of recovery . I had a 9cm tumor at the junction of my stomach and esophagus. Ten weeks of chemo and radiation turned that big tumor into .8cm . No mets ! Stage 1 ! I had my surgery at Emory and it lasted 11.5 hrs due to some prior complications . I had the Ivor Lewis technique done . I am a survivor ! My experience is much like yours . The mental pain is the worse ! I have lost 45lbs and have only minor problems !

    • bart says:

      Dennis

      It is good to hear you are doing well. We have conference call support group meetings for patients and caregivers to share their journey and the issues they are experiencing. This helps those patients and caregivers who are just entering the recovery cycle. We would like to have you on a conference call if you think appropriate. http://fightec.org/services/.

      Look forward to talking to you.

      Bart

  23. michelle says:

    I just finished 5 weekly chemo treatments and 23 daily radiation treatments yesterday. My esophagectomy is scheduled for february 1st. Im scared, but have been reading and studying on it, and I know what’s coming. Im up to the challenge. I am strong and except for cancer, am otherwise healthy. I plan on kicking my cancer in the ass!!!

    • bart says:

      Michelle

      Continue to have that attitude when you go into the hospital fro your surgery and remember to keep that same attitude when you come home. People think the challenge is over when you have had the surgery. In effect teh chalenge is taking on a lifetime journey and your attitude will be what keep you strong.

      When you get home if you would like to be part of a conference call support group of patients and caregivers who are on the same journey please let me know. Good luck and we will keep you in our prayers.

      Bart

  24. Joe says:

    Hi Bart haven’t been intouch lately,I had a bad bought w/ a bad gull bladder hi temp & lot of pain. I have about 5 radiation treatment and a chemo left. It looks like they pretty much zapped my esophogus down to not much left. That gull bladder problem made it tough to maintain a good diet. I’m about to enter that month of resting up,& the wait to see if the treatments workked,thanks for your help

    • bart says:

      Joe

      Keep me informed of your month of resting. Make sure you continue to exercise during this month. It is not totally resting and the exercise will help you with whatever they decide to do going forward.

      Take care

      Bart

  25. Susie says:

    Hi, thank you for having this website. There is so much helpful information. Wish I would’ve seen it a few months ago. My husband had an esophagectomy in February 2016. Lots of complications and has had to have quite a few dilations since then. Think we are now past that point but can’t get the diet right. He’s sick for about an hour after each meal. No matter what he eats. He does the 6 meals a day and supplemental drinks. We have tried everything we know and have seen a nutritionist too. He said he gets an upset stomach with cramping and some nausea. Have tried medication but it doesn’t help much. He is continuing to lose weight and depression is setting in pretty hard. He does not exercise right now. He has to work 5 days a week and is so exhausted when he gets home he has no energy for anything. I am at a loss of how to help him and he can’t tell me what he needs. We are both very frustrated at this point and he is depressed and in pain on top of that. Any suggestions on diet that will not make him so sick after he eats and how to gain? He eats the same thing during the day every day at work because it doesn’t make him too sick. He’s afraid to try different things there because he doesn’t know the reaction and has used all his sick leave. He has a very demanding job mentally as well. And any suggestions that I can do to help him. I feel he has given up and I can only do so much. Would appreciate any help you could suggest!

    • bart says:

      Hi Susie

      The first question I have is “Is he eating a balanced meal each time he eats. If he is heavy on carbs this could be given him the problems with his stomach. Have him eat very slowly. One doctor told me treat each meal as if it was costing you 100.00 put the utensil down between bits, chew the food very well and eat very slowly.

      I need him to exercise. This could be taking a walk around the block or if it is cold go to a mall and walk around the mall. Exercise has been in my experience personally got me out of depression.

      Another help that I have found is taking 10-15 minutes a day and find a quite place and just meditate. He needs to put everything that is going on aside for that 10-15 minutes and think of a peaceful setting with no obstacles, beautiful weather, sun shinning maybe near an ocean and just get involved in that moment.

      If his depression is getting bad you need to see a professional.

      We can go over what he is eating and if you want to give me a call you can at 732-385-7461. YOu may also want to be part of a support group we have that meets by conference call once a month. You can go to our web site http://www.fightec.org and JOIN and click yes to support groups and i will get you the information.

      Take Care

      Bart

  26. Gigi Smith says:

    I just found your website and I have to say it is like making new friends!! I was diagnosed December 18, 2014. Almost same situation as you. Stage 3 tumor at the junction. God led me to Ohio State and I did a clinical study. No metastasis. Ha surgery July of 2015. All tissue came back free from cancer! Praise God! I have since returned back to work after being off a year! All that you describe is exactly right! Sleep with a wedge pillow, eat small amounts, ( which makes a cheap dinner date)! I am getting ready to do an endoscopy and next set of scans in January. I too ark one day at a time and continue the Thank God for the gift of life! The only issue is have is sometimes I have a slight cough when I first eat. Have you experienced that? I
    I eat almost anything I want except heavy or thick breads. I don’t drink pop. Getting ready to start up exercise again. This has been an encouragement to me! Would love to keep up!
    I too blogged during my treatment. Got me through!

    • bart says:

      Gigi

      It is good to hear you are doing well. I haven’t experience the cough you mentioned but maybe a small amount of water (mouth full) before you eat may be enough to irrigate your throat and get by the initial cough.

      I mentioned on your Facebook note that we have conference call support groups that meet once a month. If you would like to participate please go to our web site http://www.fightec.org and click on the join button ans say yes to the support group question.

      Look forward to talking to you

      Take care

      Bart

  27. Joe says:

    Say
    Bart,what types of things,like high fever or like now,I have what seems like a pinched nerve in my back,but it exte
    Nds to my ribs. It seems im super concerned every thing? Wanting things to go smoothly. Did you have interruptions that concernd you?

    • bart says:

      Joe

      A high fever and a pinched nerve are things you should mention to your doctor.

      As to the second part of your note, its a mind set. It is your mind looking at the worse possible outcome and that is what you are dwelling on. You need to come to grips with the fact that you can’t change the past because it has happened and you only can learn from that. You can’t change the future since you have no control over what will happen tomorrow. You only have control over the current moment you are in and be positive with that.

      I have a saying and it is God sits on my right shoulder and there is nothing that He and I together can’t handle.

      Take Care

      Bart

  28. Sharon says:

    Bart, I had the Ivor Lewis in 2010 and did well initially, I had the surgery done in a small hospital. I have developed a rare condition where my food can’t digest and need a revision of the surgery . I am waiting now for a date to have this done in a larger hospital with an experienced surgeon. I have high hopes this will take care of the problem and I will live a long life!!

    • bart says:

      HI Sharon

      Having this surgery done in a small hospital that doesn’t see this disease often could have been a problem but apparently things went well.

      It seems the food you are eating you are not digesting and I am wondering if you have tried any digestive medicine. I think, and I am not a surgeon, that they will need to widen the lower muscle at the bottom of your stomach so food will pass easily.

      Its good that you are going to a bigger hospital as long as the surgeon has done this before and are experienced doing esophagectomy surgeries.

      Have you asked the surgeon about what side effects you may have from this surgery. If he has done this before can you talk to the patients that he operated on to see how they have handled this surgery.

      Good luck and let me know how you do.

      Take care

      Bart

  29. Sharon says:

    Bart ..the condition is called Redundant Gastric Conduit and is a direct result on how the surgery was done. The surgeon I have seen for the next surgery is experienced and I have done my homework this time.

    Thank you so much for responding
    Sharon

  30. Chokyi Nyingpo says:

    Hello Bart

    Thank you for this blog – it is very illuminating and a great resource.

    Greetings from ‘down-under’ Australia!

    I, too, have had Ivor Lewis surgery (January, 2016). I was 4 days in ICU and then another 4 days in the ward.

    I first had 5 weeks chemo and 23 days radio and then a 4 week break before the surgery.

    My surgery was unique here in that I was the first patient where the surgeon inserted a stent at the site from the very beginning. He, and his 12 fellow GI surgeons from around the country have decided that this will be the norm for all future patients – post-surgical complications and infection are reduced with it inserted first.

    I am prompted to write here to agree with you about locating and getting an experienced surgeon for the Ivor Lewis procedure. My surgeon had done over 200 of these before me and his practice is only as a specialist abdominal procedures so he is a very well-experienced surgeon.

    Loathe as I am to say this as I don’t wish to cause alarm but information is just that, information, and one always can filter out stuff later. That being said however, there has only been one post-operative death from this surgeon and that was only due to an infection that was not the result of the surgery so one can say he has a 100% success rate.

    My wife and I asked around an awful lot before deciding to go ahead with the surgery and was told we chose the right one as he had ‘magic hands’ to quote many other survivors.

    It is better to have a one surgeon doing many of the same operations that to have many surgeons only doing a few each; having it done in a major rather than minor hospital is also advantageous.

    As you say, exercise is very important – after the initial home care of about 3 months I started hydro-therapy exercise three days a week along with my daily walks and am still doing it and walking more and more each day.

    I find that sitting in my car seat can be uncomfortable still as there is pressure from the seat cushions at the site of the two drain locations.

    I also agree with your advice re: eating small amounts lots and watching when you drink. I find carbonated drinks are a no-no unless the bubbles are greatly reduced to non-existent first.

    I have found that food that ‘clumps’ together (for want of a better word) is to be avoided – such as bread; fibrous foods too. Chewing a lot first (masticating) helps to liquify food before swallowing and this helps to reduce dumping syndrome.

    You advice about sleeping is well advised too.

    All in all, 12 months is a good result for me and am glad that so many of your readers are getting good advice from this blog.

    Good luck for the future!

    • bart says:

      Chokyi

      I am interested to know more about the stent they put in when they did the esophagectomy surgery. What is the intent in putting the stent in? Is it to keep the passage way open so you don’t have the scaring tissue block the opening in your esophagus and therefore don’t need dilations?

      Thank you confirming what I have been telling people based on my experience. It is seemingly the norm that people should follow post surgery. We have written a book called Esophagecotmy Post Surgical Guide Questions & Answers that can be gotten from our web site http://www.fightec.org that address about 100 issues that patients experience post surgery.

      We also are producing a You Tube Channel https://www.youtube.com/channel/UCDkh7_H9BOnNASdmG4pdF0g that has about 16 videos from doctors patients and caregivers as well as TV spots we have had over my 16 years. Worth looking at.

      Please let me know about the purpose of the stents.

      Thanks and take Care

      Bart

      • Chokyi Nyingpo says:

        Hi Bart, and thanks for your reply.

        One or two things I would like to point out first is that the site of my cancer was at the join of stomach to esophagus; 7 cms of esophagus and the same of stomach was removed during the 7 hr procedure. It was called, ‘esophageal gastrectomy with laparoscopic mobilisation’.

        As I understood it, and prior to the stent being put in, the Ivor Lewis procedure here in Oz would result in the patient having feeding tubes inserted in the abdominal wall directly into the duodenum while the surgical ‘join’ healed a bit, generally in about 2 weeks.

        By putting the stent in at that site first my surgeon was able to not have 2 feeding tubes in and for the site to heal faster as there would be no initial obstruction for either food or drink; the stent was removed via endoscope (during a day surgery visit) about 6 weeks later and I might add with no side effects.

        PS – My surgeon explained dilation vs dilatation:
        the eye pupils are dilated (either pharmacologically or due to neurological impairment) whilst ‘tubes’ such as urethras and uteruses are manually or instrumentally stretched in a process called dilatation.

        • bart says:

          Thank you for the explanation and the reason your surgeon used the stint. I will talk to some surgeons in the U.S. to get their feedback. If anything of significance comes up I will let you know.

          Good Luck and take care

          Bart

  31. Chokyi Nyingpo says:

    I might also point out that my surgeon said he would only do the dilatation procedure post-operatively if I am only having liquid food. As I am a long way from that it seems my internal scar tissue is healing very well.

    • bart says:

      Hi Chokyi

      If your surgeon will only do a dilation when you can only take fluid in my opinion would be that it is to late in the process to then consider doing a dilation. If you feel food is struggling to pass through your esophagus I think it is better to do a dilation at that point since the procedure would be easier then waiting when the esophagus is almost entirely closed to do the same procedure. It could be he could not open your esophagus enough with one visit and you may have to come back for several visits to get it done. I would think that is riskier then doing it early in the process. I think you should pose this question as to when to do a dilation to a gastroenterologist and see if he or she shares that same approach.

      I look forward to hearing from you. Australia is a place I probably will never be but it is good hearing from someone down under.

      Take Care

      Bart

      • Chokyi Nyingpo says:

        We went back to our surgeon about 9 months later (last September) as I was having difficulty swallowing – it turned out I was not and it was only my wrong choice of foods!

        My wife is a general and surgical nurse and one of her patients at work had had the dilatation procedure every 2 weeks for 3 months! My surgeon explained that it would not be necessary to dilate me as the stent had enabled the ‘join’ to be evenly apart from the beginning.

        • bart says:

          I would be interested in knowing what were the food products that caused you the problem and will you have to avoid those foods in the future.

          Take care

          Bart

          • Chokyi Nyingpo says:

            As mentioned above, i found that food that clumps and food that is fibrous are a no-no, e.g. clumping food: bread, pastries, biscuits (though some biscuits i find OK, go figure), fibrous food equals meat, some vegetables like celery.
            It might be the case that my new ‘join’ is closer to the upper sphincter in my throat that other patients and thus causes further constriction that if the new join was lower. I can well imagine that the distance between the top of my throat and the start of the new stomach can also cause problems if the ‘lump’ of food is too big for that space. I don’t know. I’m open to suggestions from others who have a newly shortened esophagus. Each one would have a different length depending on the amount of tissue that had been removed.

          • bart says:

            First let me say that you don’t have a sphincter in your throat. The sphincter was removed when they did the esophagectomy surgery I would think. I think there are 4 sphincter in your body. The one that is between your esophagus and stomach, one at the bottom of your stomach (Pylori) and two further down in your body.

            As I have said I am not a doctor but I think stretching your esophagus should enable you to eat those foods.

            Take care

            Bart

  32. Annie says:

    Hi Bart,

    Thank you for this forum. I went to see the surgeon with my father today. He suggested that my father had advanced cancer, normally not a candidate for esophagectomy, but due to his youth and the fact he shown good results after the chemo. He suggested that surgery will be best chance for cure. However with high chance of reoccurrences.

    The alternative will be to stay on chemo, but he said it is likely my dad will not see the end of this year.

    both option don’t sound very promising.

    Did you search for other alternatives than surgery?

    • bart says:

      Annie

      If the options are that the surgery may ultimately result in a recurrence or don’t do the surgery and he will die shortly I think I would take my chances with the surgery.

      I personally did not search for other alternatives to treat my esophageal cancer. I went to the best hospital and did my homework on getting the best surgeon and left it in his hands. One doctor told me that with a stage III tumor I had a 5-10% change of living 5 years. Well in May of 2017 I will be 17 years from surgery.

      I do not know where you live or the surgeon you are talking too and the institution he is involved with so I am not sure but I would get a second opinion from a Cancer Center that has a Thoracic Department with surgeons that have done a good amount of esophagectomies in his career.

      We have a list of surgeons that are members in the General Thoracic Surgical Club that would be a good place to get a second opinion from someone in your area. If you want to discuss this please call me at 732-385-7461

      take care

      Bart

  33. Lyndon says:

    Bart
    I had the esophagectomy in April 2014 to remove stage 4 ardenocarcinoma at the junction of my oesophageus and stomach (after 13 weeks of Chemo). I spent 7 hours in surgery, and was in ICU for 2 nights. I left hospital 10 days later, but had a very hard time at home. Many months after the operation it was correctly suggested that I had become lactose intolerant as a result of the surgery, the removal of the gall bladder, and the effects of change to my immune system. I also had (and still have) Chronic Fatigue Syndrome. As a result of those complications I lost 33 kgs in weight (but that wasn’t so bad – I was a bit heavy). My surgeon here (in Australia) told me as I was released, to consider myself a cow, and graze….. He also said, “above all else you don’t have space for lettuce…”. So I can’t have dairy, anything that’s been within a metre of onion, carbonated drinks, a lot of the gas producing vegetables and nuts etc. I still eat about 8 times a day even though I’ve now returned to fulltime employment. I found my 2 “super foods” early and still stick with them (chocolate and a breakfast cereal here called Rice Bubbles”). We have a very good support group here called The Mark Grundy OCAGI. You should get in touch with Polly from them.

    • bart says:

      Lyndon

      I also was lactose intolerant after surgery. I was not lactose intolerant before the surgery. I stayed away from lactose items for a couple of weeks and then tried a little milk and my system accepted that. I then tries ice cream and that worked as well. the surgery in effect creates a new stomach and it has to get reacquainted with what you use to eat. You may want to give it a try on a small basis and see how that makes you feel.

      Chocolate at night usually causes acid reflux but during the day I like a piece of it once in a while.

      Can you send me the email address for Polly

      Thanks for your post

      Bart

  34. Joe says:

    Hi Bart haven’t touched base in a while,. I’m having my surgery on the 16th of Feb. They will be doing a biopsy of 2 spots @ the bottom of my right lung, something showed up on the pet scan, the tumor in my esophogus shrunk alot but I had a skip leason so they have to take 3/4 of my esophogus (alot), prayers for a successful surgery are welcome, thanks Bart

    • bart says:

      HI Joe

      Good luck with the next step in your journey. WE have published a book called Esophagectomy Post Surgical Guide Q&A that reflects most of the common issues you may experience post surgery. You can get this on our web site http://www.fightec.org or from your local bookstore. The book is published by Authorhouse.
      I developed a saying while I was being wheeled in for my surgery and it is “GOD sits on my right shoulder and there is nothing that He and I together can’t handle”

      Take care and you will be in our prayers

      Bart

  35. Joe says:

    Made it through surgery Bart,day7,discharge tomorrow, didn’t get pathology report maybe in wk/wk &1/2.full liquid diet, I have a real bad gull bladder that will have to o be delt with later. Made it through surgery thank God. Now the next step of trying to heal & reclaim my new life,the change seems somewhat overwelming scary,etc.I intend o, 1 step @ a time w/God @ my side. Thanks again for your help Bart

    • bart says:

      JOe

      Great news. We can help you through your new challenge. We have published a book called Esophagectomy Post Surgical Guide Q&A that is available in book stores or on our web site http://www.fightec.org. Also we have conference call support groups that meet once a month for an hour. Patients and caregivers who have been through the surgery are involved in these groups. We have a group that meets on Wednesday and one that meets on Thursday. Both are at 8:00PM (ET). If you would like to join us there is no cost involved or if you would like to talk about the best things you can do as you start your recovery process please give me a call at 732-385-7461.

      Joe one key thing and that is to exercise and stay positive.

      Take Care

      Bart

  36. Lara says:

    My father was diagnosed with oesophageal cancer in February 2016 and I hope that by writing this I can inspire hope in others. My father was 79 when diagnosed. The prospect wasn’t good. Although it was early stages we were told right from the start that the operation was not an option for two reasons, my dad’s age and the fact that he had a pacemaker. It was devastating to say the least. My dad went through chemo and radiation. All the while having his oesophagus widened at least every month and a half to allow food to pass. The treatment following my dad’s chemo and radiation was practically non-existent. His oncologist never fully answers question. Finally after much pushing another scan was done and it showed my dad’s tumour had shrunk by more than 50%. His oncologist finally refereed him to another doctor who may consider doing the operation. They met with the doctor who said she would do the op. We were beyond excited and happy. A week or so later my dad’s oesophagus started closing again so the doctor who was to perform the op said she would do the widening and that way she could take a look inside before the op. But that day changed everything. The doc went in and instead of widening the oesophagus she put in a stent and told us that she wasn’t able to do the op anymore. My dad was not happy as he had specifically said he didn’t want a stent put in no matter what. Her reasoning for not doing the op anymore was 1) something about the cancer being around the back of the oesophagus and 2) my dad’s blood pressure was all over the place. We were devastated with this news and naturally it hit my father hard. From there on the care from my father’s oncologist was severely lacking and it was almost as if they just couldn’t care anymore and that as there was nothing they could do for him he must just go home and die. He suffered terribly after the stent was put in. This was October 2016. 8 months after his initial diagnosis. By the end of November/beginning of December 2016 my father landed up in hospital. He couldn’t eat, had no appetite, had major discomfort and constantly felt full and was in pain. He had already lost a drastic amount of weight. His oncologist still didn’t seem to care. In fact after my dad was 4 days in hospital with no visit from the oncologist who admitted him my mom went to go and find her (she’s in the same hospital). Her answer, I forgot he was in hospital! The lack of care and compassion my dad was getting was making me so angry. This was not a doctor oaths! A doctors oath is to do all you can to save a patient and care for them till the end. I couldn’t sit back and watch this anymore, that day I began searching for the best oncologist in our area. It wasn’t long before I came across a website that mentioned their philosophy towards cancer patients and towards cancer treatment is holistic and that they are continually striving to achieve their core purpose of excellence in the provision of comprehensive cancer care. It went on to say patients can be assured of treatment in line with the best available anywhere in the world. I knew I had found the right place. I immediately phoned and asked a million questions, told my dad’s story and questions about the doctors and then selected the perfect oncologist and was ever so grateful for the super friendly secretary who patiently answered my millions of questions. By the end of the call I had made an appointment for my dad to see the new oncologist who specialized in oesophageal cancer. Now I just had to convince my dad to go to the appointment. He’s very loyal but luckily I think he had had enough of this lack of treatment he had been receiving from his oncologist and went to the appointment. This was 19 December 2016. The appointment went well and the new oncologist had all the tests, scans and results from the original oncologist. He told my parents I have no idea why they won’t do the operation. You are an excellent candidate. Yes you are older and have a pace maker but I’m going to send you to a cardiologist and the ‘gullet’ doctor and if they give you the all clear, we’ll operate. As it was late in the year and all doctors were about to go on leave for Christmas, the appointments were scheduled for the week of 23 January. The wait was hard but we had hope again and over the past 10 months we had certainly learned how to be patient. In the meantime my dad went to see his own cardiologist, who gave him the all clear. Then it was appointments with the cardiologist and the gullet doctor who would do the operation. They both gave my dad the all clear. The operation was scheduled for 2 weeks’ time, 9th February 2017. Exactly 1 year and 2 days after his diagnosis! The two week wait for the op was agonising. Again we found ourselves waiting. I spent every evening and weekend with my parents. My dad got his will and all his affairs in order. My brother flew out from the UK. We had to face reality, we knew this was a big op with big risks. Today it is 27th February 2017 and earlier today my dad came home from hospital post op and he is doing exceptionally well. The operation was a huge success and they removed his oesophagus and part of his stomach and got all of the tumour out. Just 19 days ago I wasn’t sure I would see my dad again. But he’s home now and I can’t wait to get off work so I can go and visit him in the comfort of his own home! I can’t wait to see him back around the house fixing something or finally getting back to putting his MGA back together (a project he was working on before his diagnosis). My dad’s scars have healed incredibly well and he’s getting more and more mobility and strength back each day. I know this is long recovery, but from the day my dad was diagnosed 12 months and 20 days ago, I trawled the internet for information, for personal accounts and for success stories. Some of what I read scared me. Most people who got the op were younger than my dad by quite a few years and most didn’t have a pacemaker. So I’m writing this today in hope that this gives someone else hope if either you or someone you love is going through oesophageal cancer. If you are not happy with the treatment you are receiving from your team of doctors, please go and get a 2nd opinion. We weren’t expecting a 2nd opinion as such, we just wanted proper care for my dad as the cancer took its toll. But we got so much more than we bargained for. We got the op we had previously been declined. We got hope and most importantly life again. Cancer is hard on both the patient and the family. I pray for each and every one of you on this road and I really do hope this story will give you hope to keep fighting and to make the hard choices. My dad had two options once he met with his new oncologist. Chemo treatment to manage the cancer or the operation. My dad didn’t hesitate, he chose life knowing the risks and today I am so very glad he did. Strength to you all. P.S. We will be celebrating my father’s 80th birthday at the end of March and we have so much to celebrate this year.

    • bart says:

      HI Lara

      Thank you for sharing your Dad’s journey through this disease. We need to feel very comfortable with the doctors we use to help us. There is no doubt that a second opinion especially with this disease is important. You need to focus on the body, mind and spirit of a patient. Picking the doctors that are good, have the solid experience and make you feel good about what they are planning to do is the first key. Once that is accomplished you need to have your mind buy into what is going to be done and your spirit knowing that God will be with you through the ordeal. The idea of all three elements being positive will be a benefit to the patient going through they surgery but that same positive attitude needs to be part of the post surgery process and beyond.

      Thank you again for sharing this

      Bart

  37. Ed says:

    I’m 75. I was in very good health until the esophagus cancer diagnosis 3 months ago. Finished 5 weeks chemo and 24 days of radiation.Doctor is recommending surgery next.(Cleveland Clinic) At this time I have no problem swallowing food and I am somewhat reluctant to follow through with surgery. Lara, the results of your dad’s journey is very encouraging. I am still hesitant about the surgery but your dad’s positive outcome gives me hope.

    God Bless and thanking you again for sharing his story.

    • bart says:

      Hi Ed

      I am told there is a study that says people who go through Chemo and radiation and find that there is no evidence of disease as a result of the Post chemo/radiation PET Scan stand a 50% chance of having a recurrence if they do not go through the surgery. Surgery is a major decision but you are at an excellent institution with surgeons who have done this surgery a number of times.

      Buy into your decision and put all the positive thoughts into the surgery as this can help.

      Take Care

      Bart

  38. Jesse Lopez says:

    Hi Bart,

    I host a podcast on Itunes called Surviving Surgery. Would you or any other of the members on your support group be interested in having a discussion about how you were able to overcome such great odds? Thanks Docofalltradez

  39. Karen Wilde says:

    Hi my brother had bis esophagectomy on wed the 15th. Was a 10 hour surgery. I feel so sorry for him when l visit as he looks so uncomfortable. I was really anxious about visiting incase l cried in front of him. It is what is to come that l dread and when l look in his face l nearly break down. Havent been able to stop crying since l visited him. Please pray and send him all tour best wishes.

    • bart says:

      Hi Karen

      What your brother needs is to see a positive face when you visit him. He know starts a journey that is like no other he has experience. It is a learning experience. He needs to work on what he can eat and how he can sleep and the exercising he must do. If he remains positive through the early months of of his recovery process the process will go well.

      You should get him a copy of the book “Esophagectomy Post Surgical Guide Questions and Answers”. It is published by Authorhouse. This book will make him knowledgeable abut the most common issues he may encounter on his post surgery journey. Take a look at http://www.fightec.org. Esophagel Cancer Education Foundation (ECEF) has support groups that meet once a month by conference call. Being a part of a call that involves other patients who have been on the journey can help him as he encounters issues.

      ECEF also has a You Tube Channel that you can get to from their web site that shows videos of survivors and caregivers.

      Smile and be positive.WE will keep you and your brother in our prayers.

      Take care

      Bart

  40. Kurt Wilson says:

    I was diagnosed with Stage IIB esophageal cancer in Sept, 2013. I under went 6 weeks of chemo and radiation followed by Ivor-Lewis surgery on 12/26/13. Biopsied 30 lymph nodes and all were benign. It was a tough recovery from surgery, but now over 3 years out from surgery I am doing great. Surgeon says 95% chance the cancer is not coming back.

    • bart says:

      Congratulations, well done. You may want to think about giving something back for your good fortune. If you would like to get involved and help spread an awareness message please let me know

      Bart
      732-385-7461

  41. Diane says:

    Bart, my father is two years post surgery which took place at the Mayo Clinic. To say it has been difficult would be an understatement. The physicians here in Fargo put a feeding tube back in him this month. He just could not sustain his weight by eating orally. He has so much difficulty with not being able to eat enough with the new position of the stomach. They also this week had to put a catheter in his back to regularly drain his left lung…there is no sign of cancer anywhere yet it continuously fills with fluid and leaves him short of breath. Have you heard of similar situations occuring after this surgery.? It has been truly difficult. Thank you.

    • bart says:

      Hi Diane

      I have not heard of a lung filing up with fluid and it not being cancerous. I know this sounds difficult but is he doing any exercising. One of the issues with not eating is not exercising. Let me know if he does exercise. He can walk until his heart starts to pump faster and this will get his blood circulating and from past patients this has helped them in the healing, eating and good mental position through their recovery.

      He should have overcome most of the post surgical issues in the two year since his surgery.WE have a book called Esophagectomy Post Surgical Guide Questions & Answers. You should get him a copy. It is published by Authorhouse and you can get it on Amazon or on our web site. http://www.fightec.org

      Stay in touch

      Take Care

      Bart

  42. Pauline says:

    Hi Bart,

    My 76 year old mother was just diagnosed with EC. She will be starting chemo/radiation and then surgery. It’s so overwhelming. We have a big family and are keeping positive. She has stage 2 and T3n0 tumor. At first I was very anxious about the treatment but now the surgery scares me more. She is very active. How long will it take for her to get back to herself? The oncologist said this is curable. I did not ask if this would reoccur. I don’t believe in statistics . Thank you for your help.

    • bart says:

      HI Pauine

      WE have a book called “Esophagectomy Post Surgical Guide Q&A” that you can get on our web site http://www.fightec.org or order through Amazon or at your local bookstore. The Publisher is Authorhouse. We also have support groups that meet by conference call that your mother and yourself can participate in. Send me an email if you want to be involved. It is a good way for patients in the recovery cycle to talk to other patients that are going through the same journey. It gives patients the feeling that they are not in this thing alone.

      Take Care

      Bart

  43. Karen Wilde says:

    My brother had esophagectomy 3 weeks ago. Is still in hospital. Has gone from one thing to another. Was due to come home got pneumonia. Then fluid built up under his lungs so had to have drain tube reinserted. Then had 3 heart episodes and was sent to cardiac ward. Now has been sent to icu and all tubes reinserted as has small leak, fluid in his lungs, fluid under his lungs and an infection in the site where they attached his stomach to esophagus. He is really down at the moment because it seems to be never ending.

    • bart says:

      Karen

      Your brother has certainly been through a lot. The hospital where he is at should have a social worker that could help him navigate through these challenges. He needs to focus on the positive things in his life and something special to him that is worth living for.

      Take care

      Bart

  44. Debbie says:

    I was diagnosed with breast cancer Feb 2016 went thru 3 surgeries,chemo and radiation my radiation ended in Nov. 2016.I am doing great,then on Dec 10,2016 then cancer came back into our lives my husband was diagnosed with esophageal cancer,stage 3c he has surgery tomorrow we both are terrified, but we are keeping the faith and praying, one of my husbands favorite things to say is GOD will not give us more than we can handle.We have 7 beautiful children and 6 grandchildren and 2 on the way this year he says he will be here to see them grow. it has been a rough year but we will not give up. We pray no one else does,prayers to all

    • bart says:

      Hi Debbie

      I applaud your husbands attitude and his positiveness will help him through the surgery. WE have a book called “Esophagectomy Post Surgical Guide Q&A” that you can get from Amazon or your local book store. You can also get it on our web site http://www.fightec.org The book is published by Authorhouse.

      When your husband gets home we have support groups that meet by conference call. These are made up of patients who have gone through the surgery. The groups meet monthly on a Wednesday or Thursday evening for one hour. We usually have a doctor on call as well. It gives the patients the feeling that they are not on this journey alone and there is comfort in sharing the issues you are encountering and hear what other patient have done with those same issues.

      Good luck with the surgery. We will keep you all in our prayers.

      Take Care

      Bart

  45. Keith R Prince says:

    Hello Bart. I am into this dream now right at 7 month’s after surgery. When I was given the diagnosis I had prepared myself for the worst. With my Lord God as the driver of my car I imagined myself riding shotgun listing to the 70s station. I put all of my problems in his hands and have done my best to retain the positive attitude. I have been doing great until just a little over a week ago. I began having so pretty bad pains in my stomach when I swallowed. In the beginning my voice also changed. The pain now is a constant problem however. I’m not sure what is going on but Monday I have.a PET Scan and then see the Thoracic surgeon Thursday. I’m thinking if not hoping that this is normal in some patients. Anyway I should know Thursday. But whatever the change may be…..I am still certain that l can whip this thing. Thanks for the ear and heart !

    Keith Prince
    US Army
    Military Police Investigator (Ret)

    • bart says:

      Hi Keith

      You have allowed your Lord God to lead the way and I think that is the way to go. I have a saying and it is that GOD SITS ON MY RIGHT SHOULDER AND THERE IS NOTHING THAT HE AND I TOGETHER CAN’T HANDLE.

      Whatever the news is your positive approach to what has been your journey needs to stay strong with you. I have another saying and that is MAKE WHERE YOU ARE BETTER BECAUSE YOU ARE THERE.

      Keith please keep me informed.

      Take Care

      Bart

  46. Gary Heller says:

    Bart; thank you for this page. My mother died of esophageal cancer when she was just 2 years older than I am now. I was diagnosed 18 months ago with BE but we don’t know how long I’ve had it. The Dr. thinks a long time. He biopsied and didn’t see evidence of cancer but I’m on strict medication and lifestyle changes. Honestly, I still have heartburn and I’m not optimistic for my next EGD at the end of this year (2017), what with the family history and all.

    Your article doesn’t have a surgery date but it looks like around June 2016. Here we are 9 months later – how is the quality of your life compared to before the surgery?

    Thanks in advance
    -Gary

    • bart says:

      HI Gary

      I am not sure how you estimated my surgery around June 2016. Actually my surgery was in May,2000.

      I refer to my quality of life post surgery compared with before the surgery as a “Different Normal”. I weighed 250 pounds before I was diagnosed and am now at 205. So from an eating point of view I am eating smaller meals now and when you think about it everyone should eat smaller meals more often. Sleeping I use to sleep flat in bed but now I sleep on an angle which everyone should do as well

      I an eat everything I ate before the surgery, I play golf 3 times a week now and overall I am in good health for someone who will turn 75 in September.

      Hope this helps

      Bart

  47. Sarah says:

    My father-in-law just got an esophagectomy and is expected to return home within the next few days. I would like to help out as much as I can, but with two small children, I won’t be making any long visits. I’m hoping to bring in some gifts, but with a feeding tube food is out of the question. I plan to bring lots of photos and art projects of the grandkids. To all survivors and loved ones: Are there any nice gifts or gestures that were really helpful (towards physical health and/or emotional health) during the recovery period? Thanks.

    • bart says:

      Make a positive impression on him. Exercising is a key in the recovery process so whatever you can do to give him the incentive to exercise is important. The most important think I think you can give him is your love and remind him of your children and their love for him as well. Showing him what the kids have done is great. Try to get him to focus on that and that his goal is to see them grow up and go to college. Having a goal to live for is also important. There is a book called Esophagectomy Post Surgical Guide that you can get through Amazon or at your local bookstore. It is published by Authorhouse. You can also get it on our web site http://www.fightec.org

  48. Walt Pettit says:

    I am exactly 2 weeks post Esophagogastrectomy. They removed all of the esophagus and the upper 1/3 of my stomach. I was sent home with a drain in my neck and on a full liquid diet. While I do not have vomiting, it seems tat every thing I eat goes through me within and hour. I know it sounds like dumping syndrome. However, I am drinking high protean drinks and soups. any suggestions?

    • bart says:

      When will they take out the feeding tube? Once you start eating solid food this should change. Have you spoken to your doctors or a nutritionist? Dumping is not eating a balanced diet. Your carb intake may be too much. Ask your doctors if the valve at the bottom on your stomach may be the problem?

  49. John Bonewell says:

    I have a good friend that just went there espshageal surgery. He had no chmo before and has no cancer. the surgery was in feb 2017. we are in to may now and his has put back in a reh home. He refuses to eat and has given up on life. Only food he gets is through his feeding tube. I loved to cook and eat before and i think he just cant see life not doing that. I just lays in is bed and stares at the ceiling refusing to even turn on the tv. He is also starting to holosinate a litte on how they are taking in him for a even worse surgery. Doctors say he is 100% phsycally and can eat anything he wants. I do bring him a milkshake when I visit and he drinks it right down. ANy sugestions?

    • bart says:

      He needs to have a reason to live. Does he have children? What were his interests before he got the cancer? If you can get him up and walking that will help him out of the depression. It sounds like he needs a professional to help him out of the depression. If he is clear of cancer why is he so depressed?

      Try and talk to him to find out why he is feeling this way.

      I had esophageal cancer and I am a 17 year survivor. If you can get him to call me 732-385-7461

      Take Care

      Bart

  50. mary says:

    Hello, My Husband starts Chemo/Radiation on June 12th 2017. Needs 23 treatments then the plan is to rest for 3-4 weeks and have surgery. He is stage 3 at the GI junction. Our team of doctors have been very helpful with our questions. We are a little nervous but my husband who is 55 is confident that this is not the end of the line for him. He is anemic right now so feels week, but other than that has been able to eat. He does experience reflux now, this is something that just started. My questions is after surgery, we know he will have a feeding tube our surgeon said more 3-4 weeks. Does your throat get really dried out and how do you handle this?

    • bart says:

      HI Mary

      You will always have the opportunity to suck on ice cubes or if the doctor agrees some candy. You should be able to take liquids while on the feeding tube but check with your doctor.

      I would suggest you get a copy of our book “Esophagectomy Post Surgical Guide Questions & Answers”. It is published by Authorhouse and you can get the book on Amazon or your local bookstore or you can get it on our web site http://www.fightec.org.

      Once he has had the surgery, we have conference call support groups that meet once a month on an 8:00 PM conference call phone line. If you are interested in this kind of support please let me know

      Take care and good luck

      Bart Frazzitta
      President
      ECEF

  51. Sheree Goodman says:

    I AM CURRENTLY UNDERGOING CHEMO THERAPY AND WILL BE GOING TO MSKCC FOR MY SURGERY. ALTHOUGH RARE, MY ESOPHAGEAL CANCER WAS CAUSED FROM RADIATION I HAD TO A NODE IN MY LUNG 12 YEARS AGO. I AM VERY NERVOUS ABOUT THE SURGERY AND THE QUALITY OF LIFE AFTERWARDS. PLEASE GIVE ME SOME INSIGHT TO WHAT I HAVE IN FRONT OF ME.

    • bart says:

      Hi Shree

      WE have produced a book called “Esophagectomy Post Surgical Guide Q&A”, which will talk about the issues you may encounter as you recover form this surgery. You can get this in your local bookstore or from Amazon or from our web site http://www.fightec.org. It is

      The two major changes are eating and sleeping. In this surgery they normally will take a portion of your stomach and esophagus so that they get good margins. Because of this you will need to eat more smaller meals to get enough calories to maintain your weight. When you think about it everyone whether they have had this disease should be eating smaller meals.

      Because they remove the valve on top of your stomach which acts as a lid for your stomach you will not be able to sleep laying down. You will need to sleep on an incline about 25 degrees. If you were to lay flat your stomach would be higher then your throat and by pure gravity what was in your stomach would roll up into your throat and you could aspirate this and have problems. These are the two major areas that you will need to address.

      WE have support groups for post surgery patients that meet by conference call in the evenings.

      If you have any questions please give me a call at 732-385-7461.

      Good luck

      Bart Frazzitta
      President.

  52. Mimi says:

    Bart,
    Who did your surgery? I am in Madison, WI and looking for the best with highest case volumes and lowest leak numbers. Thanks so much!

    • bart says:

      I had my Surgery at MSKCC in New York City. You should check our Dr. Mario Gasparri at St Mary’s in Madison.

      Take care

      Bart

      • Mimi says:

        Thanks Bart. What are your thoughts about surgeons at Mayo vs northwestern vs university of Michigan? we have people to stay with in all three places.. I understand the risks with this surgery and I want to find the best possible suregon for my father. I will even fly to Pittsburg to see Dr. Luketich if he’s the best.

        • bart says:

          I don’t have name at Northwestern but you should check out DR Mark Allen and DR Shanda Blackmon at Mayo Clinic and DR Rishi Reddy at University of Michigan. You should ask them the number of surgeries that they have done and how many has your institution handled for the last 12 months. You needed to feel comfortable and confident as to the choice you make.

          Let me know what ones you would like to check into.

          Bart

  53. Kathleen Trickett says:

    Hi,
    I have cancer stage 1 in my esophagus.
    In the next 4 weeks l will have an esophagectomy.
    I’m 41, healthy (apart from cancer) and have a beautiful family. I’m quite scared, any advice?
    I have found that there are not many support groups and that esophageal cancer is not well known in the general public. I have done lots of google searches so l think l know what lm up for. So overwhelmed. Anyway
    Kath

    • Kathleen Trickett says:

      I’m in Australia.

    • bart says:

      Hi Kathleen

      I ma an esophageal cancer survivor of 17 years. My wife and I have formed the Esophageal Cancer Education Foundation (ECEF) in part to help patients through this disease. Our web site http://www.fightec.org can be of help. There are two books one called 100 Questions and Answers about Esophageal Cancerr and Esophagectomy Post Surgical Guide Questions & Answers.

      We have support groups in the US that meet by conference call once a month. I ma not sure at this point if we can handle someone calling in from Australia but if you are interested I cna find out for you. We meet at 8:00PM (EST) Send me an email at info@fightec.org

      Take care

      Bart

    • Mike Mastergeorge says:

      Have you discussed endoscopic submucosal dissection which has been used for stage 1?

  54. Geri says:

    Hi Bart. I’ve been looking at this site off an on since March of this year when my husband was diagnosed with Stage 3A EC from Barrett’s Esophagus. He went through chemo/radiation and just had his surgery August 25 at Duke in Durham, NC. His surgery should’ve been done in May but he had complications from a J-tube being placed shortly right after diagnosis (which he never used pre-op). Surgery went well and there were no signs of cancer left and all nodes removed were clean. Recovery went very well. He was in the hospital for 11 days. Was released eating full liquid diet and is now advanced to soft foods and doing well with those. He gets full much quicker and eats more frequently. He’s hoping to get J-tube out next week when we return to Duke for pre-op visit. He has maintained a very positive attitude throughout this experience which has been a very big factor in his recovery. I would say to anyone facing this – please stay positive and keep your body and mind active. If you are a person of faith, hold on to that and seek God. No one understands why these things happen or are allowed to happen. In those times of pondering I learned that all I could do was just trust. Trust that God is in control and that He has a plan. Another thing I would advise would be to have this procedure done, if possible, at a larger hospital by someone who has done many of these. Our local hospital only does 8-10 of these surgeries per year and Duke does significantly more so it was our decision to have it done there even though it is 3 1/2 hours from our home. This is a big surgery but you can do it and do it well, just like my husband has. He is still in the recovery period and we are both learning a new way of life regarding eating, meals, meal planning, etc. but we are doing it. There will be times of feeling overwhelmed and stressed but just know that “this too shall pass.” Take one day at a time and be thankful for all the positives that come your way, no matter how small they seem. Always find something to be thankful for. When your mind starts taking you to dark places, change channels. Think on things that are good and just know that you are not alone and things are going to get better. I hope this will encourage someone who is walking the path behind my husband. Bart, thank you for this platform to try and encourage. Your story is so inspiring and I thank you for sharing. With so many negative articles online regarding this diagnosis, it was a breath of fresh air to see your story. Keep up the good work.
    Geri

    • bart says:

      Geri

      Everything you mentioned in your writing is right on. We have a book called Esophagectomy Post Surgical Guide Q&A that is published by Authorhouse. It can help identify and respond to issues your husband may face during his recovery process. You can get it in the bookstore or on our web site http://www.fightec.org

      Take care and stay positive

      Bart

  55. Mary Jones says:

    Hi Bart,

    I am one week into treatment, chemo and radiation for Esophageal cancer and I can’t begin to tell you how grateful I am to have found your blog. It has given me HOPE!! Thank you, thank you, thank you!

  56. Robin says:

    Thanks for this site. I had my surgery at Moffitt on July 17th. Surgery and recovery has gone well.

    I still have difficulty eating a lot of items and keeping the food down. Right now we have to stretch the esophagus every two weeks.

    I have my first PETct scan this week to make sure no cancer popping up elsewhere. We were fortunate to have caught it very early though.

    • bart says:

      Hi Robin

      We have conference call support groups on a monthly basis. They meet in the evening at 8:00 PM (EST) and the group meets on Wednesday and the other on Thursday. We have patients from all over the U.S. and Canada calling in. We usually have a surgeon on the call as well. If you would like to join us go to our web site http://www.fightec.org and click on JOIN.

      I am glad the site has been helpful to you. I look forward to hearing from you and speaking with you in the future.

      Take care

      Bart

  57. Julie says:

    My spouse was diagnosed-terminal esophageal cancer abt six mths ago. Docs said tumour too near lung n heart to hav esophagectomy. He’s on round 4 of chemo. He had a stent in but is in lots of pain lately. After stent placement he cld eat better but due to the pain, he can’t sleep properly everyday. Docs prescribed morpine but the side effects I read can kill or make a person addictive to it! They gav him only mths, max a yr left….I’m wondering why they are refusing to give him an esophagectomy?

    • bart says:

      I think you should get a second opinion from a cancer hospital. We can suggest a surgeon if you tell us where you are located.

      Take care

      Bart

      • Julie says:

        Thk u Bart for getting back to me. We r located in Alberta, Canada.

        • bart says:

          Hi Julie

          I asked that question thinking I may have a doctor who you could use for a second opinion but I do not. Sorry. I still think a second opinion would be a good way to go.

          Take care

          Bart

          • Julie says:

            Thk u still for trying to help Bart n for this informative site. Greatly appreciated. God bless!

          • bart says:

            Julie

            Take care

            Bart

          • Crystal says:

            Not sure if u have been able to locate a thoracic doctor in Alberta. I highly recommend Dr. Ken Stewart at the Royal Alex hospital in Edmonton. He is amazing npatoent, kind and loves taking care of his patients.

          • bart says:

            Crystal

            Thank you for this information. If you would give our web site http://www.fightec.org to Dr Stewart and ask him if he would like to talk about what we do and let me know. If you get me his contact information for me I will contact him.

            Thank you

            Bart

  58. Paul Holland says:

    Dear Bart,
    Thank you to the Esophageal Cancer Education Foundation and your and your wife’s dedication to it. The posts in the blogs sections were extremely helpful (and continue to be helpful) during my esophageal cancer journey.
    Below is the miraculous success story of my esophageal cancer journey to this date of October 27, 2017. I do not wish to take away from those who have not fared as well as I but I wish to give hope to those who are facing this terrible disease. It is possible to return to a healthy life.

    I am a 64 year old retired husband, father and grandfather who works part time. I was diagnosed in October 2016 with a malignant tumour mass at the GE (gastroesophageal) junction, which was post operatively diagnosed as a T2N1 Adenocarcinoma Esophageal Cancer. My wife, Kathy, has been at my side and supporting me as my caregiver throughout this journey. She deserves as much credit for my successful return to good health as the doctors, nurses, dieticians and the Province of Ontario’s amazing health care system. I am forever indebted to her for her tireless care during a period of time when her father was nearing the end of his own three year battle with a second bout of cancer that would take his life a week before my surgery. My extended family has been incredibly supportive and they also deserve my sincere thanks for their support.
    I have been a mostly healthy individual throughout my life except for a prediabetes condition, high cholesterol and teetering on the edge of high blood pressure – all of which I have addressed with diet changes. I have suffered from acid reflux that I have been treated for with different Proton Pump Inhibitors for about 15 years. The first indication that I had a health issue occurred in March of 2016 when my blood donation was not accepted by Canadian Blood Services because my hemoglobin was too low. I was directed to contact my doctor. My family doctor, Dr. Kate Morgan, referred me to a General Surgeon, Dr. Lawrence Green. At my appointment on April 15, Dr. Green explained that my low hemoglobin indicated I may be bleeding internally. I had no obvious indication of bleeding so Dr. Green recommended a colonoscopy as the first step in the search. I was told my appointment would not be set until late August 2016.
    In June I started to lose my appetite and weight. I had discomfort in my stomach, a recurring cough, felt fuller faster when eating and difficulty swallowing. Foods I had previously enjoyed I did not enjoy. I had always enjoyed beer but now I could barely get one down. Sometimes I felt pressure at my sternum or conversely as if I had a depression there. After consulting with Dr. Morgan and Dr. Green in late July and early August respectively, it was recommended that an endoscopic procedure be added to my colonoscopy appointment. My loss of appetite and weight loss continued. The procedures were performed by Dr. Green on October 13. Immediately after the procedures, Dr. Green told me my colonoscopy was fine but he had discovered a mass at my GE Junction and he had taken a biopsy for further examination. At my follow-up appointment on October 27, Dr. Green told me I had esophageal cancer. He recommended I speak to Dr. Paul Chiasson from the St. Mary’s Hospital Thoracic Surgery Department. On November 2 I met with Dr. Chiasson. He recommended an Esophagectomy using the Minimal Invasive Ivor Lewis (MIE) surgical technique. This surgery involves the removal of the top of the stomach, the majority of the esophagus and associated lymph nodes followed by the pull up of the remainder of the stomach and its reattachment to the remainder of my upper esophagus.
    Before the surgery Dr. Chiasson arranged for another endoscope and biopsy, a breathing test, a CT scan, a PET scan and meetings with a dietician. The scans indicated that one or two lymph nodes were affected by the cancer. He recommended I receive five weeks of radiation (5 days a week) supported by once a week chemo treatments. I met with Dr. Darren Gopaul, Radiologist, at the Grand River Regional Cancer Centre in Kitchener, Ontario about my radiation therapy and Dr. Brian Healy, Oncologist, at the Cambridge Memorial Hospital in Cambridge, Ontario about my chemotherapy. I was tattooed (ball point sized) for the aiming of the radiation and underwent a MRI of my brain in search for any other cancer (there was none).
    I continued to have eating issues and my weight kept dropping. I usually ate cold cereal for breakfast, grilled cheese sandwiches for lunch and various dinner options prepared by Kathy. I did not enjoy eating and it became a chore. I supplemented my diet with Boost and Ensure. I had previously enjoyed orange juice in the morning and carbonated beverages during the day. I could not stomach either. I switched to apple juice, water and flat beer occasionally. Kathy made me smoothies with Ensure/Boost, protein powder, ice cream, Greek yogurt and fruit. To minimize weight loss, one must persevere and “eat through” the unpleasant taste and feelings involved with food. I started a diary recording what I ate & drank, bowel movements, exercise and daily temperature readings. I highly recommend this as it is easy to forget and the information is important when speaking to your health team. Kathy made notes at every appointment which was important since the amount of information one receives is overwhelming.
    On December 5 I had my first chemo and radiation treatments. Since the chemo was in support of the radiation, I received a smaller dose of chemo than some. My five chemo treatments and twenty-three radiation treatments continued over the 2016 Christmas season ending on January 9, 2017. The chemo treatments were painless except for the minor “prick” for the blood tests and the intravenous tube. The chemo sessions lasted between two and four hours. The radiation was painless and lasted about fifteen minutes. My side effects from the chemo/radiation were relatively minor – loss of weight, night time racing thoughts, weakness and tiredness. I ate as much as I could, used Gravol for the racing thoughts and took a one to two hour nap each afternoon. It was recommended that I walk a mile a day to keep physically fit. I used the treadmill and walked outdoors depending on the weather and Kathy’s availability (she would not allow me to walk alone). Three days before my last radiation, I started to feel burning in my throat and esophagus. This lasted about ten days after my final radiation. The burning made eating even more difficult. Before I began to lose weight in June, I weighed 155 lbs. At the end of radiation, I weighed 123 lbs. When the burning subsided, I noticed that my appetite returned and my swallowing and stomach issues vanished. I was over-the-moon happy since I could eat normally again after eight long months! I continued to avoid high acid foods and carbonated drinks. My surgery was scheduled for February 6 at St. Mary’s Hospital in Kitchener. I had two weeks to gain as much weight as I could. I ate whatever I wanted – ice cream, Danishes, bacon, cookies, pie, extra potatoes with gravy. I put as much butter and margarine as possible in and on anything I was eating. I gained 17 lbs. by my day of surgery and weighed 140 lbs.
    Dr. Chiasson suggested that I use the button operated intravenous pain medication and that I did not need a feeding tube. My surgery lasted five hours and I awoke in the Intermediate Care area of the Chest Unit. I had several small incisions around my navel and some other larger ones on my right side and back below my armpit. I had two drains – one with a pump and another smaller grenade shaped device. I also had an intravenous tube(s) for pain and other medication and a catheter. I was told that I would suffer pain in the range of 3 to 5 out of 10. By using the pain medication pump I estimated my pain to be about a 2 during my hospital stay. I did have some hallucinations during the first couple of days. I developed a fever on my first night that was successfully treated with Tylenol. I was given a Spirometer, a device to inhale into with three balls that move depending on the strength of the inhale. I was instructed to do this several times a day. On my second day with the help of a therapist and my wife I walked from one end of the hallway to the end and back using a walker. On my third day I was able to go to the bathroom on my own and had my first bowel movement since surgery. Late in the day I was moved to a semi-private room across the hall. At this point I was given a liquid diet intravenously. On the fifth day I had a barium swallow and X-ray to check for leakage at the attachment point in my throat. All was good. I was put on a liquid diet and had my first “food” by mouth since surgery. I swallowed normally and did not notice any difference in my swallowing. On my sixth day I graduated to a post esophagectomy diet of mushy foods. On my seventh day I was released from the hospital and went home. What a fabulous relief!
    I had nursing care twice the first week and once a week until my stitches were removed by the Nurse. I continued the post esophagectomy diet under the guidance of a Dietician. Kathy had taken a leave of absence from her part time job so she cared for me 24 hours a day. I weighed 125 lbs. when I came home. The Dietician suggested that I make 150 lbs. my goal. It was recommended that I eat 6 to 8 small meals a day. I usually had three larger meals a day with snacks and Boost or Ensure between meals. It was recommended that I refrain from eating within two hours of bedtime to avoid reflux. I had to learn to recognize the new signals of when to stop eating. If I over ate it was very uncomfortable. Usually walking helped to alleviate the discomfort. I also kept a container of water close by which helped keep my water consumption up although never enough to please the Dietician. I was restricted from taking baths but I could shower. I slept on my back on a 23 degree wedge and a pillow. I did not perceive any reflux at that time. Initially I had loose bowel movements which I treated with Imodium. Within the first two weeks I suffered from constipation which I treated with Senokot. It is so important to stay on top of the constipation. If at any time I had not had a bowel movement by the third day, I started to take Senokot. My stools were watery but over several months they have returned to near normal. I had a nagging cough that was actually helpful as coughing helped me remove air from my new anatomy. Sometimes I would cough until a blast of air shot out of my throat which helped to relieve any discomfort. After three weeks the skin on my stomach became sensitive and I suffered short pains in my abdomen due to nerve damage at my incisions. This lasted several weeks then subsided. On March 9 Dr. Chiasson gave me the go ahead to resume taking baths and eating and drinking whatever I wished. He recommended that I work up to walking a mile a day. At first my wife and I walked around the block but slowly increased the length to a mile. After a month I had only reached 130 lbs. but was thankful as I was going in the right direction.
    On March 9 I received the pathology report on the esophagus and stomach tissues that were removed. The tumor had invaded the muscle of the esophagus and one lymph node of the 25 lymph nodes removed had proven to be cancerous. All of the margins were clear.
    On April 4 I returned to my part time retail job. On May 1 we restarted our weekly tennis lessons. On June 6 we went camping for 4 days. I substituted two pillows for my wedge and have continued sleeping on my back and sides on the two pillows at home. A couple of times I have sensed that I have refluxed but nothing serious. On June 25 we spent a week in Ottawa and camped several times over the summer. Gradually my stomach has expanded to the point where I eat three full meals usually delaying dessert for an hour. I also snack on granola bars and fruit between meals. If I have an evening snack it is popcorn. I continue to be monitored by my Surgeon and my Oncologist on a 3 month basis. In July I had a CT scan and my Oncologist detected some shading on my liver. He sent me for a MRI. The MRI did not indicate a problem and my Oncologist suggested that it may have been a “breathing shadow”. Never the less, I am scheduled for a follow up MRI next February to make sure.
    Today, October 27, 2017, it has been one year since my diagnosis and almost 9 months since my surgery. I weigh 143 lbs. I fully participate in all aspects of life and I am enjoying the blessing of good health that I have received.
    I wish everyone who is on their own cancer journey the very best. Stay positive – your good health can return.

    Sincerely
    Paul Holland

    • bart says:

      Hi Paul

      Thank you for sharing your story.

      We have a program we are developing here in the US called a Peer to Patient Program (PPP). If you think back the most difficult time you had was when you first heard you had the cancer. Would it have been helpful to you and Kathy if after the doctor told you about the cancer he said “we have someone who has been through the surgery would you like to talk to him” Would talking to that person been a help in coping with the unknown for you? Well this program maps out how this can be done. If you are interested we can discuss it.

      Let me know what you think.

      Take care and thank you again

      Bart

  59. Paul Holland says:

    Bart,
    I think speaking to someone who had experienced EC would have been very helpful . I would be very pleased to help by speaking to anyone on the EC journey.
    Paul

    • bart says:

      Hi Paul

      A thought, why not present the idea to your surgeon and see what he thinks. I can help with the narrative about the program and I can communicate with him or her about it.

      Let me know what you think

      Take care

      Bart

  60. Paul Holland says:

    Bart,
    I have an appointment with my surgeon on Nov. 15. Please send me the narrative so I may prepare.
    Paul

  61. Wayne Muncey says:

    I had esophagus cancer surgery in March of this year have done well with my recovery although it has had it tough moments. I can eat most anything but I am staying away from sugars and sweets also not much bread. Occasionally I will have some Ezekiel sprouted bread. A 6 month check up with pet scan showed no cancer. My problem seems to be portion size. My wife says that half of what I ate is not the proper size. I was not over weight before and have continued to loose some weight. When we are out and not able to eat another part of a meal I take a protene drink to suppliment my eating. I walk and have started going to a gym. So over all I am doing well just struggling with the amount to eat.

    • bart says:

      Wayne

      When you get up in the morning get on the scale and see what you weight. write it down. Then have 6 meals a day (2 BK, 2 Lunch and 2 dinners). Whatever you ate before you were diagnosed for a given meal cut it in half and have it at two sittings. The next morning get on the scale again and see what following that plan had on your weight. You can keep a food diary to see what you ate at each meal. If you lost weight you need to eat more at each meal.

      You could have desserts but make sure they are part of a balanced meal. Ask your wife to cook with creams for instance when she makes soup. Try and use high calorie foods.

      Let me know if this works.

      I recall answering ta similar note from you so look at both notes.

      • Wayne muncey says:

        Thanks for the reply. I had my surgery at Vanderbilt and My surgeon has told me that sweets would make me feel sick. I tried some and they do make me feel bad. My wife has made me some sweets made with stevia and some goodies on the trim healthy mama plan. I seem to tolerate these well. My surgeon was also concerned that I would stretch my stomach by eating too much at a meal even if it was a half. He cautioned me that I didn’t want to stretch the stomach. My wife has used cream as you suggested and avacodoes and other foods that would be high in calories. Her concern because of what the dr said is eating too large of portions. Is this a huge concern. My concern is loosing too much weight I was about 160 before surgery and now down to around 130 my primary care dr doesn’t want me to loose any more but my surgeon says some beople get down to high school weight and never gain it back. I am almost there now. I will try weighing and adding a little extra

        • bart says:

          I am not sure I would agree with your surgeon. I am out 17 years and my stomach has grown a bit, not much. I am able to eat three meals a day and a small snack in between meals. I was 250 before I was diagnosed and went down to 170 about 2 months after the surgery. Now I am 205 and I have been at that level for years. It is where I want to be. Let your scale be your guide.

          If you like, we have conference call support groups that meet once a month in the evening. We have people who have just had the surgery and people who are out anywhere from 6 months to 15 years. If you would like to participate please go to our web site http://www.fightec.org and click the join button and say YES to the question about support groups. We have a group that meets on a Wednesday evening and one that meets on a Thursday evening by conference phone call. There is no cost to join this esophageal cancer conference call support group. It will be interesting to you to see how other people are doing post surgery.

          Take care

          Bart

          • Ersel Muncey says:

            Hi Bart
            Just want to thank you again for the information. I have followed it and have been able to put on a few pounds. My recovery is going well March 9th marked one year date of my surgery. I had a CT Scan couple weeks ago and no cancer was found Praise The Lord. I am gaining my strength and stamina and enjoying getting to be more active. Thank you for all you do. God bless you
            Ersel Muncey

          • bart says:

            HI Ersel

            Glad i could be of help. We have conference call support groups available if that is of interest. All you need to do in the comfort of your living room is to call in and you can participate in a support group. We meet once a month in the evenings. Let me know if this is of interest to you.

            Take care

            Bart

  62. Wayne muncey says:

    Thanks for your help I may just join in on the group when we get home from our trip. I especially like one of the comments you gave someone to stop worrying about the survival rate and live your life. I choose this attitude I want to live whatever time God gives me and live as normal as possible. God bless you thanks for the ministry you have.
    Wayne Muncey

  63. Francine says:

    hello Bart
    My husband who is 77 is scheduled to have the esophagogastrectomy on January 11 2018
    he has received 6 weeks radiation and chemo treatments, tumor shrunk quite a bit he is at Stage II no spreading to lymph nodes .
    he is having surgery done laparoscopically at UCSF with robotics assisted resection
    he is in good spirits has been cleared for surgery even with his chronic kidney disease . Was your surgery laparoscopic ?
    needless to say i am pretty scared as we have no family at all and i will be his main care taker. What can I expect afterwards? I appreciate your site and your sharing your story

    • bart says:

      HI Francine

      No my esophagectomy was the open method. major incisions. We have a book called Esophagecotmy Post Surgical Guide Questions & Answers that you can get on our web site http://www.fightec.org or at any book store. It is published by Authorhouse. We also have conference call support groups that meet in the evening for about 1 hour a month. Almost all the patients and caregivers on the calls are post surgery. If you like you can JOIN by going to our web site and clicking JOIN. there is no cost involved.

      You can also call me with any questions that come up 732-385-7461 or send me a message or email bart@fightec.org

      The surgery he is having is widely used. The book will tell you the most common issues an esophagectomy patient may experience. No one can tell you how your husband will react post surgery. If he can maintain his positive feeling through the surgery and through his recovery period he will be ahead of the game.

      Good luck and let us know how he does.

      Take care

      Bart

  64. Ochieng Hesbon says:

    Thanks for encouragement my wife had esophagectomy on 18/10/17 she is doing well histological report stage 2A 1 out of 2 lymph does she need any therapy. She is 30years old.

    • bart says:

      HI Ochieng Hesbon

      I am not a doctor but I think if she had lymph node involvement they may want to give her chemo on a post surgery basis. You mentioned 1 out of 2 lymph nodes have cancer in them I assume.

      Take care

      Bart

  65. Bobbi says:

    Hi Bart,
    I had my surgery this past November. Praise the Lord I have not had any set backs. I have chosen to have a positive attitude which I think makes a difference in recovery. I do have concerns though about having to eat so much each day when I don’t get hungry at all. I also cough a lot. I’ve only read two other questions that say they cough so I guess that’s not real common. My scare after reading about this is the five year survival rate. I know my time is in the Lord’s hand and will trust Him. However, I would like to be a good steward of my life and how to take care of it.

    • bart says:

      Hi Bobbi

      First of all having a positive attitude and trust in the Lord is what got me to be a 17 year survivor of this dreaded disease. As to your question of eating to much I normally have questions of just the opposite. Let your scale be the governing factor as to whether you have eaten to much. Usually your body will react when you have eaten to much. You will feel bloated, maybe feel like throwing up and usually very tired. Let those be warning signs that you have eaten to much.

      Your question of a 5 year survival statistic was a concern of mine as well. I decided to talk to a doctor about supplements and we set a plan of taking various supplements (3) for the first five years post surgery. Once I reached that level he said no need to continue taking them and I haven’t. This gave me peace of mind and I felt I was doing something to fight the recurrence possibility.

      Staying positive and TRUST in the Lord is at the core of my recovery.

      Take care

      Bart

  66. Brenda Blais says:

    My father had the surgery seven years ago. His main problem is with thick mucus that he had a hard time getting up to spit out. Did anyone have this problem and what could be done about it. He has talked to so many doctors and they all say it is a side effect of the surgery.

    • bart says:

      A Gastroenterologist should be able to give you some advice after he has done an endoscope. It is an issue I have not heard about so I can’t share anything on the issue.

  67. Terri Graf says:

    My husband had his robotic esophagectomy 14 days ago. He was released from the hospital day 6 after the swallow test. He came home with a j tube and was told to only take in ice chips and sips of water for the first three days. He was told he could start clear liquids and then move to a full liquid diet after that. On about the second day of being home he started coughing constantly and then once he started trying to take in oral nutrients his coughing excellerated so much that he was aspirating. The doctor just recommended a otc cough syrup which has little effect. Today, he was unable to even eat jello without coughing. The doctor was called and they are concernd about a leak. We are so concernd at this point in time about the horrible cough as it causes both mental and physical exhaustion..
    We are looking for any advice or information regarding these post surgery symptoms.

    • bart says:

      A cough on occasion is noticeable in a lot of post surgery patients. A consistent cough indicates something is wrong. It could be he should see a swallowing doctor or as your doctor indicated there may be a leak. I am not a doctor but a patient who has gone through the surgery 18 years ago and as talked to a lot of patients. They should consider an endoscope to find out what is the situation and they should not wait to do the test.

      Bart

  68. Terri Graf says:

    Yesterday we recieved the path report and it came back with 2/8 positive nodes. This is a surprise to us because all biopsies, and scans were node negative. So, now there will be more chemo. So, if those positive nodes have been removed does that mean that the cancer is still there or it is gone? Plus, how much does this effect the survival rate?

    • bart says:

      I don’t think they know if the cancer is still there. They will do chemo and then go through another scan to see what the result is with that additional chemo and go from there. I am not a doctor and you should listen to them and follow their direction. If you are not happy with the plan they have for you, you should get a second opinion.

      Bart

  69. Sid Phipps says:

    Thanks for sharing your story. It’s exactly like mine. Right now I’m 4 months post surgery. I’m having a lot of bad days. Depression and severe anxiety. It’s eating that’s the hardest for me. Nothing tastes the same and not a lot even tastes good enough to eat. Do you have any advice to get past the depression, anxiety and trouble eating? Thank you for the inspiration you’ve given those of us fighting this fight.

    • bart says:

      I am sure you are not exercising and this is one way to eliminate surface depression. Try and walk at least 1 mile 3 times a week. If it gets to hot or to cold go to the Mall and walk there. Eating enough calories to maintain your current weight is an initial goal. You need to eat by the clock until you get an appetite back. Eat 6 small meals a day ( 2 BK, 2 lunch and 2 dinners) sample 8:00 AM, 10:00 AM 12 noon, 2:00 PM 4:00 PM and 6:00 PM. get on a scale and check your weight each morning. If you are losing weight try and eat a little more the next day.

      If you are interested, we have conference call support group meetings that meet once a month for about 1:00 hour in the evening. Patients and caregivers form across the country call in and we talk about issues they are experiencing. There is no cost to participate. If you like to join send me an email at bart@fightec.org and tell me if you would like to join a Wednesday or Thursday group or you can call me to discuss 732-385-7461

      Take care

      Bart

      • Sid Phipps says:

        Thanks Bart for such a quick response. You’re right I don’t get enough exercise. I will be doing something about that this week. And following your advice about eating 2 of each of the 3 meals a day. Is it online or a conference call on a telephone?
        I’m pretty deaf and really only text message. I only have an IPhone so if there’s a way to participate I’d like to check it out. My Email is NibiruRising@aol.com
        You can always email me directly as can any of you wanting to chat about anything on your mind.

  70. Cathy Thompson says:

    The last entry I see is October 4th 2018. Is this site still active? My husband was diagnosed with Esophageal Adenocarcinoma of the GIJ in March of this year and has had Chemo and radiation treatment then rest time and Ivor Lewis surgery in September of this year. He is about 6 weeks out. He still has a J tube for daily feeding and is eating some by mouth but is having a lot of problems eating and is extremely depressed. There is much more to tell but I need to know if this site is still active. Thank you.

    • bart says:

      HI Cathy

      Yes the site is still very active. The Esophageal Cancer Education Foundation (ECEF). You can look at our web site http://www.fightec.org . You can join our conference call support groups if you like. NO cost. We meet once a month for about one hour on a conference call and talk about issues that patients on the call are experiencing. If you would like to talk to me you can reach me at 732-385-7461.

      Take care

      Bart
      President
      ECEF

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