Esophageal Cancer: A Brutal Diagnosis

Bart Frazzitta, Esophageal Cancer SurvivorIt was December 1999 when I first went to the doctor complaining about food getting stuck in my esophagus. She immediately sent me for an upper GI series which came back with a brutal diagnosis: Esophageal Cancer.

A follow-up endoscopy performed by a gastroenterologist confirmed the bad news. I had a Stage III, 5-centimeter esophageal cancer tumor of the GI Junction (where my esophagus and stomach meet).

Shocking Statistics

I immediately went to the internet to learn everything I could about esophageal cancer and was horrified by what I read. According to the statistics, I had about a 10% chance of living 5 years. The shock shattered my dreams of retirement, of enjoying leisure time with my wife and watching my grandchildren grow up.

But I was determined not to give into the fear fueled by those bleak statistics.  At age 57, I felt physically strong enough to fight this cancer, but I needed a plan of action.

Had The Esophageal Cancer Spread?

I immediately scheduled a consult with a surgeon at Memorial Sloan Kettering Cancer Center. I trusted that the medical team at MSKCC would know how to fight back against this monstrous disease.

The surgeon was thorough in his examination.  A CAT scan revealed that, in addition to the primary esophageal cancer tumor, I had enlarged lymph nodes in both lungs. A biopsy was necessary to determine if these were related to the esophageal cancer.

I went into the hospital for 3 days in mid-January while the surgeon performed the procedure to determine if the cancer had spread to my lungs.

Waiting And Wondering

The time spent waiting to find out my future was unbearable. Should I prepare for my demise by getting my estate in order, or should I be planning to wage the fight of my life?

I was relieved when the biopsy results determined that the esophageal cancer had not spread to my lungs. Now that we understood the scope of the battle, the medical team at MSKCC put together a plan of attack that drew on the specialized skills of an oncologist, a radiologist and a surgeon.

A Personalized Treatment Plan

The first phase of the treatment plan proposed by the MSKCC team called for a simultaneous course of chemotherapy and radiation. Cisplatin and Taxol, both chemotherapy drugs, would be administered 24 hours a day, 5 days a week for 6 weeks, and during the same time frame, I would receive 28 radiation treatments.

In preparation for chemotherapy, they placed a mediport in the upper part of my chest, below my shoulder on my right side. The drugs would be administered through a tube connected to a vein that led directly to my heart.

Radiation treatments also required serious preparation. I needed to be “mapped” so that the radiologist could accurately focus the radiation beams.

As part of this mapping process they marked the area to be radiated by placing 3 tatoos in a straight line on my chest and 2 additional tattoos on my right and left sides.

This gave them the marks they needed to line up each radiation treatment.  In order to make sure I was in the same position each time, they also made a cast of my body by asking me to lie on a bag full of molding material for what seemed like an eternity!

In addition to these procedures, I also underwent PET scans, an endoscopic ultra sound (EUS) and multiple blood tests before all of the preparations were complete and I was ready to begin treatment.

But Would It Work?

From my initial diagnosis in early December until all of the preparations were complete in mid-February, I worried about the delay in starting treatment. Was my tumor getting larger by the day? Was the treatment plan aggressive enough? Perhaps I should have had surgery first, then follow-up with chemo and radiation?

Despite my fears, the MSKCC team assured me that the plan they had set was the right approach for me, and that the long preparation period would not have a major affect on the course of action.

I prayed they were right.

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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 >

47 Comments



47 Responses to Esophageal Cancer: A Brutal Diagnosis

  1. jack says:

    I’ve been browsing online more than 4 hours today, yet I never found any
    interesting article like yours. It’s pretty worth enough
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    • David B Matthews says:

      I opted for the surgery following chemo and radiation. Yes, I have been clear for 7 years. The down side is that for 7 years every meal has been a misery. After I eat I have 45 minutes of pain, followed by 45 minutes of nausea and then I essentially pass out for 1-3 hours. Then I get up and do it all over again…that is my life. Zero quality. Also I have been slowly starving to death even though I eat 3,000 calories a day. The doctors don’t have a clue and recommend I see a shrink…I started out a trim 175 pounds and today I weigh 90 pounds….DONT DO THE SURGERY…do the chemo and the radiation and live the best you can with it as long as you can.

      • bart says:

        Hi David

        Everyone is unique and I am an 18 year survivor of stage III esophageal cancer. If it wasn’t for the surgery I would not be here today.

        Lets look at your problem. WE tell patients to eat smaller meals more often immediately after surgery. You initially should have been eating 6 meals a day (2 BK,2 lunch and 2 dinners). Whatever you ate before the surgery at a given a given meal, cut it in half and have it at two sittings. If you had a sandwich for lunch have 1/2 at noon and the other half at 2:00 PM. You need to eat very slowly chewing your food very well and taking a good 30-45 minutes to eat a meal. Your stomach is probably getting pounded with the amount of food that it is getting at one time. Put your folk down between bites. take your time. try to eat smaller meals as suggested above.

        David if you would like to talk about all of the above please give me a call 732-385-7461

        Take care

        Bart Frazzitta

        • Peter Poor says:

          I was recently diagnosed with stage 3 esophageal cancer with a tumor at the junction of my esophagus and stomach. My treatment plan is similar to the one mentioned above. I am two weeks away from finishing my radiation and chemo. In 8 weeks I meet with the thoracic surgeon to discuss my planned surgery. I have to say that this surgery terrifies me. Reading this account helps a bit, but I wish there was another way.

          • bart says:

            Hi Peter

            We have support groups that meet once a month by conference call. Most patients are post surgery patients who participate in the call but you are welcome to join. The call is at 8:00 PM (ET). If you would like to join go to our web site http://www.fightec.org and click on the join button. there is no cost involved.

            I am sorry to say there is no alternative to the surgery if you want to get rid of the cancer cells and the area they were in.

            If you want to talk about the surgery please give me a call 732-385-7461

            Take care

            Bart

            Take care

    • Mary Coleman says:

      I also had chemo and radiation..first waited 10 weeks then had the surgery, My first CT scan will be in May. I am still on a soft food diet, grateful to be alive and cancer free. The smaller meals are a must if I over eat I have terrible chest pain that last for hours, I also can not drink super cold drinks, mostly things around room temp or I also get chest pains. Drinking enough fluids is my biggest challenge. Blessed to have found this page. This diagnosis was brutal, Kind regards Mary Erin

      • bart says:

        HI Mary

        I responded to your joining ECEF and think if you let me know what evening you would like to be part of the Conference Call Support Group Meeting (Wednesday or Thursday) we can send you the conference call information. Having enough fluids is important. We suggest you drink between the meals so that you leave room for the calories that make up your meal. If you carry a bottle of water with you and sip it as the day goes on that should work. Also green tea is good to drink as well.

        Take care

        Bart

  2. Phyllis says:

    My husband is diagnosed with esophageal cancer. Want to know more. The dr isn’t hopeful that the chemo is going to work.

  3. Paula says:

    Sir thank you so much for all the information though it is still troubling to hear all that you have to go through regarding this surgery, I find hope there is a brighter tomorrow.
    My Brother is having this surgery tomorrow and I am very concerned he is a medical professional and have faith in the Team. I am trusting God to bring him to full recovery.

    • bart says:

      Paula

      You should get your brother the book “Esophagectomy Post Surgical Guide Questions & Answers”. It is published by Authorhouse and can be gotten on Amazon or in your local bookstore. Also take a look at our web site http://www.fightec.org and click on patient services. Our support groups meet by conference call in the evening so your brother would not have to leave his home to participate. Being on a call with other post surgery patients will give him the feeling that he is not in this alone.

      We will keep your brother in our prayers

      Take Care

      Bart

  4. Ralph Esposito says:

    My prayers and best wishes for those suffering and their care givers. I had failed surgery in 2000 and things went down hill and I became essentially incapable of moving. I lost my esophagus and stomach and had six surgeries and multiple pneunomia. Eventually I was air lifted to St. Louis University Hospital where a new esophagus was made from my intestines. There was no need for chemo and radiation in my case. Now in 2017 I have few problems and a rather normal life.

    • bart says:

      Thank you for sharing your story. We have post surgery support groups that meet by conference call once a month. If you would like to be a part of this conference call meeting please let us know. 732-385-7461

      Take care

      Bart Frazzitta

  5. Dale smith says:

    I am now recovering from surgery trans hiatal esophagectomy and would love to be involved

  6. CancerConsult India says:

    thank you for sharing this information.
    Esophageal Cancer Consultant In noida

  7. SallyJuicy says:

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  8. Becky Thompson says:

    Hi Bart, I contacted you in February when my brother Charlie was diagnosed with Esophageal Cancer. You were our angel sent to us. You talked to me, contacted my brother regularly and helped him get the best surgeon we could ask for Dr Martin at UVA. My brother had his surgery June 21 and is doing fantastic. I know in my heart that his success in his recovery is because of you and your compassion to others. Thank you seems so inadequate but know that you will have a place in our hearts forever.

    • bart says:

      Hi Becky

      Thank you

      With a cancer that takes so many good people it is good to hear that your brother is doing fine.

      You know awareness of this disease is what will save peoples lives and if you can send this video to all of your family friends and business associates that would help us all get better outcomes. https://www.youtube.com/watch?v=GQ4qFYq3rSg

      Thanks again

      Bart

  9. Nancy says:

    Hi Bart,
    My husband was just diagnosed officially today, but the gastroenterologist told us what he suspected last week. This is pretty devestating to us. My husband is 42, and we were planning on retiring together, and spending the rest of our lives together. It is encouraging to read your website, and I keep reminding myself that someone has to make it, the numbers arent 0, but the numbers havent changed greatly since you were diagnosed, at least the ones that I have found. I am terrified of loosing my best friend. Are there things that we can do to increase the odds? This is all really early for us, we dont even know staging at this point, just that it is for sure esophageal cancer at the EG junction.
    Thank you!

    • bart says:

      Hi Nancy

      The first thing is to find out the stage and to work with a cancer institution for treatment. This is a rare form of cancer and the surgery if your husband can have it should only be done by an experience surgeon who has done many of these surgeries in a given year and at a hospital that has handled patients with esophageal cancer on a consistent basis.

      The mental attitude that your husband brings to the experience is also very important as well as your attitude. Be positive about the course of action you are told you should follow. Buy into the method they have set for your husband to fight this cancer.

      We have support group mostly of patients who have been through the surgery but we are now seeing more patients joining the group that are on a pre-surgery position. if you would like to join, it is a conference call group meeting. it meets once a month in the evening for about one hour. if you are interested go to http://www.fightec.org and click on the join button and click on support groups. If you want to talk about it please give me a call at 732-385-7461. Also if you have any questions you can call me as well.

      Good luck and take care

      Bart

  10. I have read your post it’s really very informative.Thanks for sharing your knowledgeable content.

  11. Melisa K.M. says:

    Hello Bart,
    My husband was diagnosed stage 3, and a large tumor like you, same location. He’s 59, we have a 10 year old, just shocking news. I fortunately had a physician client who had told me about Proton Beam therapy. Due to the tumor proximity to other vital organs, I knew this was best. We also went directly to MD Anderson.
    Our insurance denied Proton Beam therapy due to it being considered experimental, which was ridiculous to me. Contacted higher ups in HR at my Company and we received a 1 time exception.
    As a side note, a similar case arose with a couple and Aetna and Aetna was ordered to pay the couple $25M for denying based on experimental. Even Medicare, government, covers Proton Beam.
    Nonetheless, we moved to Houston for the 6 week concurrent radiation and Proton Beam radiation, which sounds like you had?
    My husband was gaining weight, feeling better, and not noticing the tumor when swallowing. Had to wait a couple weeks for follow up Pet Scan and endoscopy/biopsies, but everything came back negative and no view of the tumor in pictures, just gone.
    I sit here next to him as he is recovering from Ivor Lewis surgery. He’s done great. We are just waiting on the pathology reports of what was removed, hoping all negative.
    When we complete treatment, I will work to raise awareness. Had we stayed in our state, I don’t believe the outcome would be as good.
    I agree state of mind, prayers, and positivity help. I njoyed reading your story and am hopeful for out future, time together as a family, and our plans.
    The surgeon that gave us the first diagnosis told us not to go online and research. A lot of inaccurate information, not to mention scary statistics. I quit researching soon after and am able to stay positive. Thank you for sharing.

    • bart says:

      HI Melisa

      Thank you for your kind words.

      Who did his surgery at MD Anderson. We deal with several of the surgeons there. They are on our support group committee.

      I hope all is well with the biopsy. We have conference call support group meetings once a month. You can call in and here other patients who are post surgery sharing where they are at and the issues they are experiencing. It is an upbeat meeting and we have usually two surgeons on the call to help in
      answering questions about issues they are experiencing. We also have a book called “Esophagectomy Post Surgical Guide Q&A” that you can get in your local bookstore on on our web site http://www.fightec.org It is published by Authorhouse.

      Take care

      Bart

  12. Abby says:

    I am so happy you are cancer free!!! I have been researching esophageal cancer for my health project and I found your blog. It helped me open my eyes to what it is like for someone who is going through cancer.

    • bart says:

      HI Abby

      THnak you for your kind words. If you need any additional information about this disease please give me a call 732-3895-7461

      Take care

      Bart Frazzitta

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  14. Doretha says:

    Thanks for sharing your info. I truly appreciate your efforts and I am waiting for your further
    post thanks once again.

    • bart says:

      HI Doretha

      These post contain my entire story, We have conference call support groups that meet monthly in the evening to discuss patient issues post surgery and we have surgeon on the call to help with medical questions. If you would like to be part of these calls go to our web site http://www.fightec.org and JOIN. There is no cost involved and we do not ask for donations or use or sell your contact information. There is a question when you join dealing with support groups. Just check it and send.

      We will get back to you with the phone number and access code.

      Take care

      Bart

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  17. Christine MacLean says:

    I am a 50 year old mom of 2, no risk factors, in process of diagnosis. Likely Stage 4, as neck lymph node positive for squamous cells. GEJ tumour seen during endoscopy. CT and PET scans this week. Otherwise have always been in good health, and determined to survive. I am Canadian, and am looking for best options/ surgeons/ clinical trials etc… yours is best website I have found. Any advice much appreciated – willing and able to travel to the US if needed.

    • bart says:

      Christine

      We have a contact in Toronto. Is that appropriate for you?

      WE also know that Memorial Sloan Kettering Cancer Center in New York is working with stage IV esophageal cancer patients in an immunotherapy protocol. I cna put you in contact with an oncologist there if you want.

      Take care

      Bart

  18. Kerllee Newberry says:

    Hello Everyone,

    My husband was diagnosed with stage III esophageal carcinoma extending to the gastric cardia (measuring approximately 6 cm in length) on June 5th. On the 17th of June they inserted a port. He is scheduled for radiation and chemo on July 9th (tomorrow). We were informed the chemo and radiation would run for 7 weeks. 5 days a week radiation and 1 day of week for 5 hours on chemo (Carboplatin and paclitaxel). After completion of the chemo and radiation he will have 6 weeks off and then be scheduled for an esophagectomy. He is currently struggling with eating. He is a healthy 47 year old male. Any advise or recommendations to get us through this process would be greatly appreciated. We are located in Springfield, Missouri.

    Thanks,
    Kellee

    • bart says:

      Hi Kerllee

      As I mentioned to your husband eating or drinking his food at this stage can be helpful. If you put his food in a blender and make it with a lot of liquid he may be able to get that down. Having him drink it slowly or eat it slowly. Soups should be good. Once Chemo and Radiation start he should see some improvement in eating after about 2 weeks. As I mentioned to him if you would like to talk to my wife who took care of me when I came home from surgery 19 years ago you certainly can. He has the number to call.

      Take care

      Bart

  19. Kerllee Newberry says:

    Thank you so much.

  20. Jamie says:

    My brother was diagnosed with EC Adenocarcinoma in October 2018 did chemotherapy till January 2019 had surgery scheduled for February 2019 his stage was stage III with lymph node involvement he had the surgery they remove lymph nodes from around the area after surgery he did another round of chemo now two days ago He was diagnosed with metastatic stage four easy cancer they noticed it in a CT scan had a pet scan three lymph nodes one in the chest one in the abdomen and one in the neck showed up they did biopsy on the one in the neck and it come back cancerous do you know what the next treatment will be and if he can survive this diagnosis been looking everywhere online can’t seem to find what I’m looking for just hopeful for a good outcome he sees the cancer specialist at Hillman Center on Monday for options

    • bart says:

      HI Jamie

      I m not a doctor but a survivor of Esophageal Cancer. I would think the next step would be with an oncologist to determine a chemo regimen that they would make available to him. They are working with chemo and immunotherapy in certain cancer centers so ask the oncologist about this.

      Bart Frazzitta
      President

  21. Rick says:

    Bart, I came across your site and in just an hour of perusing your blogs, I have gained some good information as I prepare for my Ivor procedure in weeks.

    As many have noted, this is a significant procedure with any number of possibilities but I am placing my trust in two experienced surgeons. They have been cautiously encouraging of the surgery and post op recovery which seems to be the area of variability of experiences.

    Things I have going for me are that I have no co-morbidities, am in pretty good health and physical condition and that at this point, the cancer found in a Barretts EMR is confined to the esophagous (pending pathology after the Ivar). CT and PET scans were negative which was good news; I had no symptoms whatsoever of heartburn, reflux or GERD and it was only because of a conscientious PA that I was given an endoscopy as part of a colonoscopy date due to my age (69).

    My oncologist and surgeons say I am very fortunate to catch this at an early stage. Your experiences have been reassuring.

    I am now aware that the road to recovery will be steep and hopefully flatten out over time.

    Thank you again.

    • bart says:

      Rick you should take that PA to dinner.

      We are here to help you with your journey through this dreaded disease. We published a book called “Esophagectomy Post Surgical Guide Questions & Answers” that I recommend you purchase. It can be gotten through Amazon or on our web site http://www.fightec.org. We also have conference call support group meetings that meet monthly. We have groups on A Wednesday and Thursday evening at 8:00 PM (ET). We will have two doctors on the call as well.

      Good luck with your surgery. We will keep you in our prayers. Stay in touch.
      Take care
      Bart

  22. Madhu says:

    Hi, I m from India,my husband was diagnosed with esophageal cancer in September 2019.he underwent surgery in dec.19 after two chemotherapy after chemo his appetite was good and gained weight. After surgery he lost 8kgs with in 20 days. after that he underwent two chemos.after surgery his diet was ok but after chemotherapy he lost appetite which after three months was ok .What I wanted to know is right now he is taking 4 meals. he eats the way he did before surgery .one and half veg sandwich at one time ,two chapatis dal rice salad in lunch then teatime he takes two bread . dinner almost like lunch and at 11pm a glass of milk . Pls tell me is he taking proper diet and quantity is ok . He didn’t had any problem of vomiting and indigestion but feels gas and for 10min little stomach ache after he eats.but it settles after he walks .pls tell me if it okay.what all I told u or have to change .

    • bart says:

      HI Smaller meals more often are better for him. Whatever he ate before he was diagnosed with esophageal cancer cut it in half and have it at two meals. In effect two breakfasts two lunches and two dinners. Have him eat very slowly. Chew his food very well and finish a bite of food before he puts the next bite in his mouth. Allow at least two hours between the time he stops eating and the time he goes to sleep.

      Slower eating should eliminate the pain he has after he eats.

      Let me know how this works.

      Bart

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