"Especially for llohman" - Helpful references for a better understanding of how Esophageal Cancer is

LorettaMarshall · December 2015

Dear “LL”

Just wanted to acknowledge your entry here. Paul is a dear friend and I knew he would answer you about the FACEBOOK group. You will find many knowledgeable and caring people on that site. My husband and I just simply do not post anything on FACEBOOK or TWITTER. But the good thing about the group is that you will feel like you’re a part of their “FB family.” It’s a special group. I have known many of them for several years as “Cyber friends”, and have spoken with them on the phone as well. You are wise to search out others who are familiar with this cancer.

Now as for what I have written, I will tell you that it is lengthy. It is written from the perspective that you do not know much more than we did when my husband was diagnosed. No doubt we share the shock experience. We went to the doctor with a hiccup and came home with Esophageal Cancer. We had never heard of it before, and naturally did not know anyone to talk to that had the same experience. So it is from that standpoint that I write to new patients. And to issue the usual disclaimer up front, talk to your doctor about everything that I write about. This is all about my husband’s EC journey, and often the roads are similar. So find a quiet spot to read and hopefully you will find things I have written to be of help. I confess to being “long” on most of my letters because there is so much to say, in addition to saying, “I am sorry to know that your life has been touched by this cancer.” That goes without saying.

We are always curious as to the symptoms that a patient had that precipitated his/her visit to the doctor. My husband only had a pesky hiccup. He had no difficulty swallowing or acid reflux. So Esophageal Cancer can sneak up on a person. And some may not know that NEXIUM (the purple pill) can actually mask symptoms of Esophageal Cancer. And so often, that is what is prescribed when a person first goes to see their doctor about constant heartburn.

How far along in the diagnosis process is your husband?

Has he already been staged and has a treatment protocol been decided upon?
Has he had a SECOND opinion at a major medical hospital that specializes in Esophagectomies, and in particular one that has the latest state of the art equipment and latest surgical skills?
One way to assess the ability of the surgeon is to find out more about their biography. Where did they intern? How long have they been in practice? What kind of a rating does the hospital have?
How many Esophagectomies do they perform on a yearly basis?
How many medical articles have they written that have been accepted and published by reputable medical journals?
Have you spoken to any of the surgeon’s patients who could share their recommendations as to likes/dislikes?
Is the surgeon trained to perform the Ivor Lewis Minimally Invasive Esophagectomy? It is the least invasive and offers the quickest recovery time (as a rule), less morbidity and less blood loss during the surgery.

While I don’t know your husband’s stage, I can tell you that my husband William Marshall was diagnosed in November of 2002 at age 65. His diagnosis was Adenocarcinoma at the GastroEsophageal junction. He had pre-op chemo of 5-FU and Carboplatin and 25 sessions of radiation. Afterward, he had the latest totally laparoscopic surgery (MIE) at the University of Pittsburgh Medical Center (UPMC) on May 17, 2003. This minimally invasive procedure was pioneered by Dr. James D. Luketich in the mid 90s. It is the surgery of choice for all Esophageal Cancer patients who are treated at UPMC with few exceptions.

My unsolicited advice for any “newbie” is to have a SECOND opinion at a major hospital with a Thoracic surgeon who performs the latest medical procedures on a regular basis. I would ask the surgeon what type of surgery he is trained to perform and how many he has performed. Many surgeons that were trained to perform the oldest surgical procedure known as the Ivor Lewis (OPEN) Esophagectomy (TTE) have upgraded their skills and are now performing the Ivor Lewis MINIMALLY INVASIVE Esophagectomy (MIE). Ivor Lewis is the name of the surgeon who first began to perform Esophagectomies in the mid 40’s. Medicine has come a long way in the last 70 years. While some surgeons are totally competent in performing that surgery, it takes the patient longer to recover because of two large incisions, rather than small band-aid size cuts. That only makes sense. The bigger the incisions, the more possibility of infections as well as a longer time to heal.

So while a surgeon is confident that he or she can perform the Ivor Lewis surgery with their eyes closed, that surgery is much more invasive than the laparoscopic procedure. The patient is the one that has to recover. Actually, my husband was prepped and ready to have the OPEN surgery in 10 days when we learned about the newest MIE procedure from an article on the web. We had never heard of it. And like most who visit this site, neither had we heard of Esophageal Cancer, and had not the slightest idea of what types of questions to ask. So that’s why we like to let “newbies” know that there is “more than one type of surgery”. That way they know that they have some research to do, and that there are choices.

It was at least 5 years ago now that a lady wrote that her husband was scheduled to have an Esophagectomy. We told her about the MIE. She went back to her surgeon and asked him about it. He said, “Must be something new and he wouldn’t touch it!” Well, obviously he knew nothing about it, so naturally he couldn’t perform one. This laparoscopic procedure has been around for over 20 years now so every thoracic surgeon should “know” about it, even if he doesn’t desire to upgrade his skills. So you bet I want to share our experience about the MIE. One should know that there are choices, but each person’s circumstances will dictate what type of treatment they receive. At this point, since I know nothing about the condition of your husband and his stage, this information is provided for your consideration should your husband be a candidate for surgery. Even if he is not a candidate for surgery, there are many here who are Stage IV EC patients who are receiving palliative treatments. They will be of great help.

Clinical trials show that the tri-modal treatment of chemo/radiation/surgery experience better outcomes. After thorough staging, my husband William had a medi-port put in on the right side of his upper chest. Please ask for a “port” if chemo treatments have been recommended.

Moreover if eating is a problem, I suggest you ask for a “J” tube instead of one that goes into the stomach. More about that later if a feeding tube is needed to maintain adequate nutrition.)

My husband was given 2 separate infusions of Carboplatin and 5-FU for 96 consecutive hours each. at different intervals. He also had 25 radiation consecutive treatments. (Monday thru Friday for 5 weeks.) He drove himself to the clinic and had minimal side effects from both the chemo and radiation treatments. Yes, they were minor as opposed to what others find to be a grueling experience. I hope I don’t scare you to death or give you false hope.

If you did not know already, there are 3 basic types of Esophagectomies.

They are the Ivor Lewis Esophagectomy known as the “TransThoracic” Esophagectomy abbreviation is TTE. This is the oldest form of surgery and the most invasive. It is often called OPEN for a reason! That’s because there are 2 large incisions.

There is also the “TransHiatal” Esophagectomy – abbreviation THE. It is less invasive than the OPEN surgery but a bit more invasive than the MIE.

Then there is the latest laparoscopic procedure known as the Ivor Lewis Minimally Invasive Esophagectomy – abbreviation MIE. It is totally laparoscopic and is the least invasive. It can no longer be called “new or experimental”. The University of Pittsburgh Medical Center has been performing them for the last 20 years at least and is their surgery of choice.

Most likely if you’re not a nurse or a doctor, you might never have heard of Esophageal cancer before. If you haven’t, please research this cancer. The more you know, the better prepared you are to ask the right questions. I’ve found that doctors usually only answer the questions they are asked. So allow me to give you some references below my name and wish you and your husband well on this “difficult-but-doable” journey. It’s not a “piece of cake”, it’s major surgery. Although the recurrence rate is high for this rare cancer, there are survivors. Naturally, we want to see everyone have a positive experience. We pray to that end.

Since the time of my husband’s surgery in 2003, Dr. Luketich has made further refinements to this surgery. My husband only had 7 band-aid size cuts. The diseased Esophagus was removed through a very small incision in the left side of the neck. However, Dr. Luketich has now changed that location and removes the diseased Esophagus through a small cut further down on the right side of the chest. This minimizes the possibility of damage to delicate Pharyngeal and Laryngeal nerves in the neck. Heretofore the possibility of doing damage to the throat or voice box was much greater.

My husband was in ICU one day, a step-down unit the next day, out on the regular floor on Day 3 and discharged on Day 5. He was downtown shopping with me on Day 8. He is a poster child for the MIE surgery. His stage was “T3N1M0”. The “T” stands for Tumor, and it had penetrated all four walls of his Esophagus. The “N” stands for nodes. There were two lymph nodes that contained cancer as well, but they were local to the Esophagus. The “M” stands for metastasis (spread). Thank God that was ZERO, meaning that all the cancer was still confined to the Esophagus and nodes local to that organ.

Out of the 23 lymph nodes removed for pathology no residual cancer was found, thus no post-op chemo was recommended. If there had been even one node found to contain cancer, post-op chemo would have been recommended. Cancer cells multiply rapidly. The sequence of division is rapid. One cell divides and becomes 2 cancerous cells. Then those 2 each divide and now there are 4. Those 4 cells divide and that makes 8. Then 8 becomes 16—16 becomes 32—32 becomes 64, and so on. You get the picture of how rapidly the cancer multiplies.

Lastly, every Esophageal Cancer patient should be tested to see if they are HER2 positive. In some patients, there can be over-active genes. Often patients are not tested, but if a certain cell is over-active and multiplies more rapidly it can be treated with a medicine called HERCEPTIN. This is not a chemo drug, but can be given together with the other drugs at a regular-scheduled interval. At first it was thought that only Breast Cancer patients presented with this over-active gene. Then surgeons were finding a large number of EC patients were tested and found to have this over-active gene. Then the FDA approved this drug for EC patients as well. So most of the time it seems that doctors do not test the patient for it. Unless the patient knows to ask for that test, it may never be administered. So it will be one of the links that are shown below.

We are elated and delighted to share with you that my husband is now entering his 14^th year of being in remission. We use that word advisedly since recurrence is always a possibility. We would be remiss if we didn’t give thanks to God for this absolute miracle. And I pray that your journey will be as good as ours has been. When you arrive at the FB group, tell them Loretta and William Marshall say “Merry Christmas.” We are from the old school and never will consider it to be politically incorrect to wish everyone a Merry Christmas and hopes for a happy and healthy New Year.

Loretta

William now entering 14th year of remission (EC T3N1M0) -

MIE surgery @ UPMC on May 17, 2003 performed by Dr. James D. Luketich (When last I checked, he still takes self-referrals.)

Helpful research links listed here. Believe it or not, I have many more but have narrowed it to 10 for a basic understanding of what you will be encountering during you and your husband’s journey. To list all 3 types of surgeries here and explain the differences would be just way too long. This has already turned into a mini-tutorial. I will have to make that a separate entry.

http://www.cancer.net/cancer-types/esophageal-cancer

Excellent site covering all aspects of Esophageal Cancer including Questions to ask your doctor.

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2. http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-surgery

Understanding and treating Esophageal Cancer

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3. https://www.nlm.nih.gov/medlineplus/dehydration.html

Hydration very important in treatment of Esophageal Cancer. See that your husband receives regular hydration. When drinking and/or eating is already a problem, your husband should be receiving hydration on a regular basis to maintain proper energy.

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4. https://www.youtube.com/watch?v=MEqhDOOCKKU&p=895121939FDA58E1&playnext=1

A series of video series by Dr. David Cathcart explaining how to best understand chemotherapy and best practices. Note the side bar for additional topics. These are very helpful. This first in many of his series is called: “Chemotherapy Cancer Treatments & Side Effects : Nutrition for Chemotherapy Side Effects”

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5. http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

Another good site for explaining Esophageal Cancer, treatment, diet, etc.

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6. http://www.cancernet.co.uk/herceptin.htm

“What is Herceptin? It is not chemotherapy or a hormone therapy. It is called a monoclonal antibody which utilises the natural immune system to kill tumour cells. Although cancers grow mainly beyond normal growth control, they are sufficiently similar to the own body’s cells to enable them to hide from the immune system (the body’s defence mechanism against “foreign” attack). There are, however, some subtle differences between cancer cells and normal cells. Some of these differences may be detected with special sensitive laboratory tests. In the case of breast cancer there may be too many copies of a cancer-causing gene called an oncogene. This oncogene called HER2 is part of a family of genes called c-erbB-2 (otherwise known as her-2-/neu). Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being “over expressed". Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies. Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin…”

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7. http://www.biooncology.com/biological-pathways/her-signaling

Good article explaining cell proliferation

“HER signaling: Targeting a critical receptor family

Human epidermal growth factor receptor (HER) pathways play a critical role in cancer biology and are an area of intense research at Genentech, a member of the Roche Group. Dysregulation of HER-mediated signaling pathways results in the growth and spread of cancer cells.¹ The HER family consists of 4 structurally related receptors: HER1 (EGFR), HER2, HER3, and HER4…^”

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8. http://oncologystat.com/news/Minimally_Invasive_Esophagectomy_Leads_to_Low_Mortality_US.html

Published in Oncology - News · May 04, 2011 –This is an archived article. You can sign up for free as a patient and have access to this article.

“Minimally Invasive Esophagectomy Leads to Low Mortality “-

“BOCA RATON, FLA. (EGMN) — Minimally invasive esophagectomy has advanced to the point where it offers significant advantages over open esophagectomy in terms of operative morbidity and mortality, judging by results of a single-center review of 980 cases…"There is a perception among patients and physicians that open esophagectomy is to be avoided at all costs because of it substantial morbidity," Dr. James D. Luketich said at the annual meeting of the American Surgical Association.

In his review of 980 consecutive, elective, nonurgent, minimally invasive esophagectomies, the 30-day mortality was just 1.8%. Median operative time was 6.7 hours, which dropped to 4 hours in cases that were not done by residents. The median ICU stay was 2.0 days, with a median hospital length of stay of 8 days. A median 21 lymph nodes were dissected, and 98% of cases had negative surgical margins.

"A less invasive surgical approach for esophageal cancer would improve the standard of care by reducing morbidity and shortening hospital stays and time to return to daily activities… "I think by 90 days the patients have bounced back," he concluded. "Laparoscopy-VATS [video-assisted thoracic surgery]-chest anastomosis is now our preferred approach to most esophageal cancers."…Dr. Luketich has been a pioneer in esophageal resection, and I think has developed a procedure that is rapidly becoming a standard of care worldwide. This is the largest experience reported to date," noted Dr. Sugarbaker, professor of surgical oncology and chief of the division of thoracic surgery at Brigham and Women's Hospital and Harvard Medical School, Boston. "He's set the standard, both in quantity and quality, for this operation," agreed Dr. John G. Hunter, professor and chairman of the department of surgery at Oregon Health and Science University, Portland…”

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9. https://www.youtube.com/watch?v=hx4hS21AbuI

This is Dr. Ninh Nguyen in an actual Minimally Invasive Esophagectomy surgery. He operates out of UCIrvine in California. These are excerpts from the MIE surgery. It lasts approximately 46 minutes. I realize it may be more than you can comprehend at this point, but it is a great video to educate one on the totally laparoscopic MIE.

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10. https://www.youtube.com/watch?v=u3o30epRTiM

This is Dr. Nguyen giving a quick synopsis of how he performs the MIE. He now uses the MIE-Chest incision which is the latest improvement for an Ivor Lewis Minimally Invasive Esophagectomy. In this video at point 7.49 or so, he will show the placement in the right chest where the MIE-Chest incision will be made. If your husband is a surgical candidate and chooses a surgeon who performs the MIE, ask if he uses the MIE-Neck or the MIE-Chest procedure.

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llohman · December 2015

Hi Loretta,
Thank you so much

Hi Loretta,

Thank you so much for such a detailed overview. Actually shortly after my husband was informed he may have a cancer, I already jumped on all discussion boards and came across your and Paul's extensive comments and advice, so by the time we started meeting with doctors I pretty much new all possible outcomes, treatments and most of the questions to ask. Again, thanks to your and Paul's prior discussions to other patients. My husband has squamous cell carcinoma and is currently staged as IB. His staging came out at T3N0M0 but since it is squamous cell, the cell grade and location of the tumor has played arole into the overall staging. For his treatment, he's been offered 4.5 weeks of chemo with radiation. Radiation everyday 5 days a week and chemo once a week. After that 4 week or so break, PET/CT scan for re-staging and surgery to follow. Had his tumor been T2, surgery would've been sufficient alone. I don't know if that would've been worse or better since there would've always been a fear for residual cancer cells after the surgery and from what I understand, the post surgery chemo and radiation are not as effective as pre. We are in a good medical center of UW - Madison. It is one of the centers that does practice MIA surgeries via laparascope. The surgeon that would be performing it had his residency and training in Pittsburg so we are pretty confident in his expertise. My husband is scheduled to start his treatment on December 28th. At this point, my biggest fears are all possible side effects of that, surgery complications, etc. The more I read about those, the more I freak out. I am trying to live as normal life as possible at least for the period prior to treatment but it is hard not to sink in this new cancer life hole. My husband's biggest worry is the surgery itself. He did not realize it would the to the extent as it is going to be. My big concern for him is his weight and nutrition. He is a small guy to begin with and I cannot imagine what further weight loss may do to him. We know that now the main goal is to be on highly nutriotional and high calorie diet to gain as much weight as possible. He can still eat. His symptoms started unusually early about a year and a half ago with trouble swallowing and major acid reflux. Back then we did endoscopy which ended up with several biopsies and no issues were detected so the diagnosis was esophogitis with Gerd so we continued with antacid medication. This was all in June, 2014. This past October he had an incident at the restaurant when he choked on a piece of prime rib. This triggered to go back to the doctor who then again scheduled a follow up endoscopy and that is when the beast was found. So we've been in this limbo since November 23rd now. Any suggestions you may have with a diet pre-surgery, during chemo and radiation treatment, anything that can help him to gain more muscle and weight, would be greatly appreciated. At this time this is my biggest challenge. He still has acid reflux so that also limits our options. We were supposed to meet with registered dietitian as part of our cancer treatment team, however, we ran out of time, therefore, we will be meeting with her in the next couple weeks. I just don't want to waste any time at this point. Again, thank you so much for your help. Coming across your and Paul's posts early in this process, has helped me to keep my sanity and hope somewhat stronger than it would've been otherwise....

LL

"Especially for llohman" - Helpful references for a better understanding of how Esophageal Cancer is

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