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Gunnerbean2~U R on the wrong forum~however my husband is 14-yr survivor of Gastric Cancer~hope my info helps U along the way!

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Dear Gunnerboat (aka) “Rainbow”

           Would that you could see a rainbow through your tears!  While you say you “stumbled upon this site”, could it have been “divine providence!”  Most likely!  So after I say a few “opening remarks”, I will copy the letter I wrote to another person on the Esophageal Cancer site.  So just click on the blue box on the left where my picture is and you can read a little bit more “about me!”  First, I didn’t “just happen” to find this site this morning, I purposefully came here to see if there was someone I could help today.  And so that read on.  By now you have probably returned from your husband’s first chemo treatment, and you’re wondering what is going to happen.  When you read the two links from “chemocare.com” site for the 2 drugs that have been prescribed, you will be aware of what MAY happen.  They are “not a piece of cake” but you have to do what you have to do!”  But please get that 2nd opinion ASAP.  My husband had his chemo treatments locally, but traveled to the University of Pittsburgh Medical Center for his Ivor Lewis Minimally Invasive Esophagectomy.  There was no one here who knew how to perform that surgery.  Moreover, when surgery is an option, you need to go where the medical facility makes Gastric cancers one of their specialties and that the surgeons perform hundreds of this type of surgery, not just “now and then.”

           First, don’t grieve about not being able to get into the CTCA, they are NOT the number one cancer center in America, they just have a lot of money to advertise.  And your husband isn’t the first serviceperson to not be able to get treatment there.  And so, since my husband and I just finished sending 175 cards to an organization in Maryland who sends cards and gifts to service personnel who are away from home at Christmas, I will print a copy of our letter of thanks here.  It expresses our feelings and so first thank you for the sacrifices that you and your husband have made to serve the greatest country in the world.  Fortunately, we were able to get large cards with a blank page.  We were able to get this message to our beloved and often “unappreciated” military members who will “not be home this Christmas.”

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 HERE IS A COPY OF THE WORDS WE PUT ON EACH CARD.

 “We live in Va. Bch. near Oceana, the only Master naval jet base on the East Coast.   SEAL TEAM 6 located in Dam Neck and Oceana is our pride and joy.  Tidewater hosts the largest naval station in the U.S.  So you can see why we so honor our military!  Members of our own family have fought and died in combat to keep our country safe!

 Especially in this Christmas season, we must tell you how much we appreciate your service and your sacrifice to our country.  Your families make a sacrifice as well.  Long deployments cause families to be apart from their loved ones and friends.  Families share special joys at Christmas time.

 We very much support the programs outlined by our new president to be, Donald J. Trump.  He plans to upgrade our military ranks, increase our naval fleet, and build new airplanes.  We should not put our military force out to fight a war in which the enemy may well have better equipment than you do.  He plans to honor your service by making opportunities available for employment when you return home.  He will allow all the veterans to receive timely adequate medical care close to their home.  No more long waits to get help you deserve. 

 Once more we’re about to celebrate Thanksgiving and Christmas.  Our forefathers were willing to give their life to secure freedoms which all too many take for granted.  Greater love has no man than this, that he lay down his life for his friends.  Your willingness to serve means that you have voluntarily put yourself in a position just like that.  Life is precious and peace is fragile.  The best news is that we still live in the greatest country on earth.

 God has truly blessed the USA.  We deplore those that do not salute the flag for which you are willing to die.  Far too many have forgotten the true cost of freedom!  We’re reminded at this holiday season that Jesus is the reason for the season.  May you have His heartfelt peace in your heart even though you’re far away from those you love.   We sure hope this time next year, you’ll be texting a message from your smart phone, saying “I’ll be home for Christmas.”  Thanks again for keeping our family safe.

 MERRY CHRISTMAS 2016 -   Loretta and Billy Marshall

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         Now that we’re on the same page, let’s continue.  For the sake of having everything on one page, I will print the answer I gave to another person that was “newly diagnosed” on the Esophageal Cancer page.  This will be quite long.  You see I think your husband needs a SECOND OPINION right away, and because he is a veteran, his options are limited as to where he can go and be treated UNFORTUNATELY!  That said, I notice you use the personal pronoun “we” instead of “he”.  I know why—because when “he” has cancer, “you” have cancer!  And your fears about your own children and sweet grandchild loom large.  When my husband was first diagnosed with Esophageal Cancer, Stage III (T3N1M0), we were into raising our second set of children, 4 grandchildren from the same family.  And the youngest one was 7 years old.  So I know about those fears.  Naturally, the first thing on my mind, and my husband’s was, “How soon will I be a widow?  Who will help me raise these grandchildren?  Well, the Lord didn’t tell me.  He let us go through multiple emotional stages as well as medical treatments.  And as of this day, November 21, 2016, He has not told us when we are going to die.  In effect, He has said, “Don’t bother your pretty little head over things over which you have no control, Loretta!”  And so, today, I am “reduced” to living one moment at a time, one day at a time, and I’ve stopped asking, “When is my husband going to die, and when am I going to die.”  You see one of my favorite sources of comfort is Psalm 139.  Think of your sweet grandchild as you think about what the Psalmist David said.  Paraphrased, he said, “Lord there’s no place that I cannot go that You are not already there.  You even saw me when I was being “knit together” in my mother’s womb, and in Your Book ALL the days of my life were written, when as yet there were NONE of them.”  And so, “Rainbow”, try to put that question at the bottom of the list.  Only God knows how long any of us will live, and so far, I haven’t had a phone call or a text message, giving me a “heads up!”  So each time this fear rears its ugly head, as it will, I say, “Well that’s up to the Lord, and out of my control.”  And that’s exactly where you must put this “ever-present question” when you’ve just been given this alarming news.  I know “exactly” how you feel.

           And that’s why I checked in this morning, as I often do because, not to be “outdone” by my husband, I, too, was diagnosed with cancer—Peritoneal Carcinomatosis/Ovarian Cancer Stage IV when I went into the emergency room in Thanksgiving of 2012!  I thought I might have a hernia.  A couple of hours later I was given a copy of a CT scan report.  I began to “scan” it knowing that my name was at the top of this report.  And so, yes, I am terminal.  No my cancer will probably not be cured by a miracle in this lifetime.  How long will that be?  Only God knows.  Now He is the Great Physician and can perform a miracle.  But that is His choice, and not mine.  But, He’s gifted us with many great doctors and it’s my prayer that your husband will find the one best suited to treat this cancer.  And even though you wrote on the “Peritoneal Cancer” site, seems that the info you will find on the Esophageal Cancer link might be of more help, since it is a “Gastric cancer link.” 

           Incidentally, my husband only went to the doctor with a hiccup, and came home with a late stage Esophageal Cancer diagnosis.  Very often, someone who suffers with persistent heartburn can actually have Esophageal cancer, and not know it.  They often just try to cure it with something like “Nexium” which can actually mask the symptoms of Esophageal Cancer.  When my husband was diagnosed, all 4 walls of his Esophageal had been infiltrated with the cancer, and was also found in 2 local lymph nodes.   So I’m not quite certain of your husband’s diagnosis, and you aren’t either, are you.  Seems sometimes stomach and esophageal cancer seem to overlap.  When cancer is found in the Gastro-esophageal junction, some doctors treat it as Stomach cancer, while others concentrate on the Esophagus.  I only offer that as to why the two cancers overlap sometimes.  But nevertheless, I’m curious as to where the one cancerous lymph node is found.

          And another piece of advice, make it a habit of asking for a copy of ALL medical tests your husband receives, and analysis, as he has them.  God help us if the veteran can’t even be furnished with a copy of his records.  By now you get the idea that I’m not too keen on how quickly VETS are getting the treatment they so deserve.  But you need to have that complete info in hand when you go for a SECOND opinion.  Sometimes the doctors will ask you to send those records on ahead of the scheduled appointment.  That way they will have had a chance to review your husband’s prior treatments, and could help to speed things along.  Those records are not only governmental records, it is a record of your husband’s life, and as such he shouldn’t have to beg for them.  Nor should he “assume” that if he calls and ask some medical record department that they be “mailed” to the place of your choosing, because that may lie on someone’s desk and not get there on a timely basis.

           Moreover, my husband had chemo and radiation prior to his surgery.  Now I would have no way of knowing whether or not surgery will be an option, but at this point, it should not be ruled “in or out” because of your incomplete findings.  But first off, after a completion of ALL the tests necessary to validate his cancer diagnosis, including the stage, he was given a medi-port.  Then he was sent home with a “fanny pack” of Carboplatin and 5-FU” which he wore for 96 hours.  He had one of those treatments in the first part of a 6-wk. treatment, and another one close to the end.  Then he had a PET/CT scan to review the results.  He also had 25 radiation treatments.  He went in 5 days a week for 5 weeks straight for a short period of radiation.  Now back in 2003, we had no “targeted radiation” equipment here in Tidewater, but by the time I was diagnosed in 2012, I was able to have targeted radiation for 3 cancerous lymph nodes on the Caudate Lobe of my liver.  So while you only speak of chemo, there might be some radiation that could be used as a treatment process as well.  There are treatments short of surgery that can help a patient’s condition.  If no surgery is possible, still “palliative” treatments can offer help and a better quality of life.

           So it seems that your husband’s biggest problem is being able to find the best care at the best place since his choices are “limited”.  Wouldn’t it be ironic if when he was called to serve in Iraq, that he would say, “Sorry sir, but I don’t wish to serve there!”  That would never happen, but now that he needs “service” he is being told, “Sorry sir but we can’t serve you here!”  It’s my prayer that this soon changes. 

          May God bless you and give you direction in these troubled days ahead.  We can’t treat the cancer, but sometimes we can help soothe the soul.

 Sincerely Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, diagnosed November of 2012, and wife of William diagnosed with Esophageal Cancer (Gastric in nature) diagnosed in November of 2002.

 P.S.       I placed a call to CTCA.  I spoke with a representative who helped me to understand why you were not able to get treatment there.  He explained that they do NOT have a contractual agreement with the VA administration that helps defray the cost of treating VA patients.  He explained that they only get paid 11¢ on the dollar for the Medicare patients that they do treat.  While they do have a contractual agreement with the government to accept Medicare patients, they do not have a “contractual agreement” at present that will allow them to accept Veterans at their hospitals.  When I look at my medical bills, I see that what the hospitals charge, and I see that what Medicare pays them really is a “pittance.”  And if we did not carry secondary insurance, we would be “up the creek without a paddle.”  So if your husband is covered only by VA hospitalization benefits, I now understand why you were not able to get help there.  For that I am sad.  And I would imagine that on a veteran’s pay, many are probably not able to afford a secondary insurance policy.    Now he did say that when Veterans’ Hospitals are close to a teaching hospital that the VA hospital will consult with the teaching hospital.  So that seems to be the connection with Vanderbilt and your VA hospital there in Tennessee.  And I do know that Vanderbilt has a good reputation.  So now I’ve learned something that I didn’t know before about the contractual agreements that different hospitals have with the government.   He did say that perhaps with the new administration coming in that things will change.  I certainly look forward to that in oh so many ways!

           Just so you know, as far as the “best hospital” goes, there are many other hospitals who excel in treating Gastric cancers, and the Cancer Treatment Centers of America does NOT hold a monopoly.  You can see different rankings are given to different hospitals.  Note also that within each hospital the rankings will differ.  One hospital may rank well above another for special types of cancer.  So one hospital cannot claim the name to fame for “all” types of cancer.   

1.  http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

You can see the full list of rankings for Gastric cancer at this link.  But note that CTCA is not #1—just so you know!  (Like the old show “Dragnet”—“Just the facts ma’am—just the facts!”  That is a good old TV famous Detective show that was probably before your time.  Oh to see some of those old “innocent entertaining shows on TV one more time!  I’m almost 78!”)

 Please go here to see specific treatment procedures for Stomach Cancer.  I find this site to be very useful. 

2.  http://www.cancer.net/cancer-types/stomach-cancer/treatment-options

 “…Stomach cancer may be treated with surgery, radiation therapy, chemotherapy, targeted therapy, or immunotherapy. Descriptions of these common treatment options for stomach cancer are listed below. Often, a combination of these treatments is used. It can be difficult to cure stomach cancer because it is often not found until it is at an advanced stage.

        Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions…”

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 3.  https://www.cancer.gov/types/stomach/patient/stomach-treatment-pdq

 “General Information About Gastric Cancer - KEY POINTS

 Gastric cancer is a disease in which malignant (cancer) cells form in the lining of the stomach.

  • Age, diet, and stomach disease can affect the risk of developing gastric cancer.

  • Symptoms of gastric cancer include indigestion and stomach discomfort or pain.

  • Tests that examine the stomach and esophagus are used to detect (find) and diagnose gastric cancer.

  • Certain factors affect prognosis (chance of recovery) and treatment options.

 Gastric cancer is a disease in which malignant (cancer) cells form in the lining of the stomach…”

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 4.  http://chemocare.com/chemotherapy/drug-info/Oxaliplatin.aspx

 All about “Oxaliplatin” use and side effects.  Brace yourself.  It will give you a clue as to the many things your husband may expect.  One will most likely be an extreme sensitivity to cold.  I don’t mean to sound callous, but I am in my third series of chemotherapy treatments and there are always some side effects.  Some may be minor, and some may be very debilitating.  Each person will respond differently, but the aim of chemo is to kill the cancer and not the patient!

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 5.  http://chemocare.com/chemotherapy/drug-info/fluorouracil.aspx

 “Fluorouracil -  (flure oh YOOR a sil)

 Trade Name : Adrucil ® ,  - Other Names: 5-fluorouracil , 5-FU

 Fluorouracil is the generic name for the trade name drug Adrucil®. In some cases, health care professionals may use the trade name Adrucil® when referring to the generic drug name fluorouracil…”

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 6.  http://csn.cancer.org/node/301646

           This is a letter I wrote to “Brian from the North” when he asked about chemo treatments and what to expect as his mom was about to start chemo.  I shared with him things that I had learned during my own chemotherapy treatments.  I am now on my 3rd series, and it is for one thing, very fatiguing.  ___________________________________________________________________________

 And here is the letter I wrote to “Brad” about his new diagnosis of Esophageal Cancer.

 7.  http://csn.cancer.org/comment/1538009#comment-1538009

 “Brad~Pull up a chair~This a long - long letter-hope it helps U

 Dear Brad:

           You’re right where all of us were when we first saw a CT scan report that had our name on it.  “Bewitched—Bothered—and Bewildered” you bet, and throw in SCARED to boot!  You’ve got a right to be confused about EVERYTHING—WE UNDERSTAND.

          Now Brad, first of all let me say this by way of a disclaimer.  “Medical information that I share with you is not intended to be used as a substitute for professional medical advice, diagnosis, or treatment. You should not rely entirely on this information for your health care needs. Ask your own doctor or health care provider any specific medical questions that you have.”

          That said, I don’t want to scare you out of your wits because I think you’re already there.  However, having observed Esophageal Cancer “up close and personal” since my husband’s diagnosis of “Adenocarcinoma at the GastroEsophageal (GE) junction”, I cannot count the number of great people that we have met along the way on this site and elsewhere.   Just in case you didn’t know, when you “click” on the name of the person posting, up will come an “about me” page.  Some have written extensively explaining their condition and/or treatments.  Others have only “signed in” and not answered any of the questions posed there.  So I’ll not try to tell you everything “about me” and my husband who is now in his 14th year of Survival from Esophageal Cancer, Stage III, and (T3N1M0).  You can read more there.  That means little to you now, but it will as time goes by.  You are so new that what you know has already “overwhelmed” you.  Your fears are legitimate.  This is a devastating cancer diagnosis, even when one knows that they will definitely be a candidate for surgery.  But in order to keep your head above water, you have to “live one day at a time—one treatment at a time!”  At this point, trying to figure out the future is fruitless.  Coping with the present is all you need to be doing. 

          Now Brad, depending on the places where the cancer has spread will determine the “stage” of the cancer.  For instance, my husband’s cancer was in the late stage when first diagnosed.  All four walls of the Esophagus had been penetrated, and two lymph nodes adjacent to the Esophagus were also found to be cancerous.  I will compile a list of references that will be helpful for you to have a better understanding of the order of things.  And I will tell you upfront, I’m very longwinded, so anytime you see a letter from me, more often than not, you’d better pull up a chair.

           Incidentally, I am a Stage IV Ovarian Cancer patient myself, age 77.  So I write from experience as a caregiver to my husband, William, since 2002, and as a terminal cancer patient myself, having been diagnosed in November of 2012.)  I am not into holistic procedures—no snake venom treatments for me.  Now if there were clinical trials that proved snake venom was recommended for standard treatment of Esophageal Cancer or Ovarian cancer—well maybe—but so far it’s not anything recommended by top medical facilities.  And also, I don’t plan on taking a trip outside the country for some “magical cure” not available to us here in the USA.  I thank God for all the learned doctors we are so blessed to have here in our great country.  We give God credit for keeping us both sane! I thank Him too for leading us to some great surgeons and oncologists who have cared for us along the way.  People choose to handle their cancer diagnoses in different ways, but for us we find inner strength in God that enables us to have a positive attitude, even though we wish we had never heard the word CANCER.   

          Now in a condensed form (difficult to do) back in 2002, my husband had a persistent lone hiccup each time he started to eat anything—no difficulty swallowing—just a hiccup.  After 2 months I said, “Something’s wrong with you.  I haven’t had hiccups since I was a kid!” So I made an appointment with the doctor, never expecting anything serious to come of the visit.  From there our Internist arranged a quick appointment with a Gastroenterologist for an Endoscopy.  Within 3 days, the Endoscopy was completed, and the “fix was in.”  ESOPHAGEAL CANCER.  It is certain that all of us identify with those raw emotions that surge through our being at hearing those words.  The gastroenterologist called me on the phone to tell me the news!  My phone rang at 2:30 PM the day following the Endoscopy.  “Mrs. Marshall, this is Dr. Ryan.  I do wish that you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  My husband was sitting next to me when I answered the phone, so he heard me say, “How do you spell Esophageal?”  “Squamous?”  So yes, Brad our world changed in a minute just like yours. 

          The following day, we were back in our Intern’s office.  He called Dr. Ryan himself and said, “Are you sure you have the right William Marshall?”  Our doctor of 30 years had tears in his eyes, when he hung up the phone.  I still remember that conversation.  It’s as fresh in our memory as though it were yesterday.  From there our doctor set us up an appointment with the local Thoracic Surgeon here in town, who was known as the best in Tidewater.  From there the testing began.  A reference below will inform you of all the tests you will be subjected to in order to correctly diagnose the extent of your cancer. 

           We knew nothing about this cancer, and at first just went blindly along, listening to the doctor, and doing as we were told.  We didn’t know what questions to ask, and neither does anyone else when they’re first discovered to have this cancer.  Not having the benefit of any research information, as soon as we heard the words CHEMOTHERAPY, we hit a brick wall.  We said to ourselves, “We’ll just skip chemotherapy.  That stuff will kill you!”  Now mind you that was the “dumb & then uninformed” (but not now) Marshall couple speaking.  We actually told the surgeon that we definitely did NOT want any chemotherapy.  He didn’t let on at the time as to how dumb we really were.  Now “dumb” in the sense of “not knowing the facts re EC”, not as lacking good sense Brad.  His secretary called us no less than 3 and 4 times encouraging us to make an appointment and consult with an oncologist.  It took us a week to decide to make an appointment with the oncologist, because we knew his name was synonymous with “chemotherapy”.  But just to “please the surgeon”, we “finally” agreed to go see Dr. Paul Conkling.  He never “pushed” us to have the chemo, but he did tell us that in his experience those patients who chose to have pre-op chemo had better success. 

          (Now I know that clinical trials bear out the fact that tri-modal treatment is best—that being pre-op chemo/radiation & then surgery.  Sometimes when the cancer is diagnosed as “early” an Esophagectomy is performed, only to find more cancer in some of the lymph nodes that first thought.  In that case, post-op chemo is recommended.  Tri-modal treatment is definitely advantageous.)

           And it took us about 3 or 4 days after that visit to decide to go ahead with the surgeon’s advice and have the chemo/radiation treatments first.  So Brad, you’re way ahead in accepting the fact that chemo and radiation produce the best results for anyone contemplating having an Esophagectomy.

           Now in that regard, after thorough testing, a stage will be determined.  May I mention one thing here?  All Esophageal Cancer patients should be tested to see if they are HER-2 Positive.  Some patients have an overactive cell that produces cancer cells more quickly than would otherwise be happening.  If they are found to have this over-expressive gene, a drug known as HERCEPTIN is prescribed.  It is separate from the chemo drugs but is given in conjunction with them.

           According to the stage of the cancer, surgical possibilities will be determined.  Now my husband was blessed to be diagnosed with Stage III because the cancer was confined to the Esophagus and 2 local lymph nodes.  Therefore, he was considered a “surgical candidate”.  Now if his Stage had been a “IV”, no surgery would have been given, but still chemo and radiation would most likely have been prescribed.  Chemotherapy circulates throughout the entire body in search of cancer cells and kills them, unfortunately good cells are killed as well.  But you will recover, believe it or not.  The radiation is designed to “shrink” the tumor.  Surgeons prefer to schedule surgery 3 to 4 weeks after the pre-op treatments are completed.  Radiation can build up scar tissue, so the sooner the surgery is performed, the better, if surgery is a possibility. 

           At the completion of my husband’s pre-op treatments of 5-FU and Carboplatin via infusion with a “medi-port”, a PET/CT scan indicated the tumors had been eradicated completely.  That was great news and cause for a celebration.  But—we had already been told that even if the test showed “no cancer”, that an Esophagectomy would still be NECESSARY.  The reason being that often tests can miss a minute cancer cell that may not be detected until the actual surgery takes place.  This is a common practice.  And so we never entertained the idea of NOT having surgery, even though the chemo/radiation treatments were such a great success.  And we certainly know the wisdom of that now. 

           Occasionally, a patient will be able to have a cancerous nodule surgically removed without prior treatments, but that is only in the earliest of stages.  Most often this cancer is not detected until it is in a late stage.  And speaking of stage, when the cancer is found to be in another major organ as well as the Esophagus, it will be Stage IV.  In that instance, only chemo and radiation are usually prescribed.  When the cancer has spread it is called Metastasis. Even then there are helpful things to make the patient’s quality of life better.

           So my husband’s stage of “T3N1M0” meant this.  T=tumor—N=node—M=Metastasis.  So the T3 meant that the cancer had infiltrated all 4 of the muscular walls of the Esophagus.  The N1 meant that 2 or 3 lymph nodes next to the Esophagus were also found to contain cancer.  The M0 meant that there was zero Metastasis.  That’s the best news we could have had. 

           The next best news we had was that we learned that there were different types of Esophagectomies.  And most often, it would depend upon the surgeon’s “basic training” in performing Esophagectomies as to which surgery one would most likely have.  In that regard, our first Thoracic surgeon here in Tidewater, was not trained to perform a totally-laparoscopic procedure that consisted of small band-aid cuts as opposed to the 2 massive incisions in the original Ivor Lewis surgery.  Dr. Ivor Lewis first experimented with removal of the Esophagus as a treatment for this kind of cancer back in the mid 40’s.  And for many years afterward all surgeons were trained in that procedure. 

           In the mid-70s a surgeon, Dr. Mark Orringer, at University of Michigan improved on the original Ivor Lewis surgery.  It was called the “TransHiatal Esophagectomy – THE).

           Then in the mid-1990’s, a doctor named Dr. James D. Luketich pioneered a “new” totally laparoscopic way of removing the diseased Esophagus.  This procedure is called the Ivor Lewis Minimally Invasive Esophagectomy (MIE) for short.  It is no longer considered “new” since it’s now been around and proven to be very effective for 20 years.  Now many, many surgeons in training are being taught to perform the latest, most advanced, laparoscopic minimally invasive techniques.  Dr. Luketich trains many thoracic surgeons there in Pittsburgh. 

          Just about 10 days prior to having the “oldest” type of surgery, we learned about the “newest” way of performing an Esophagectomy.  So we called the University of Pittsburgh Medical Center and asked if we could have an appointment with Dr. Luketich.  Dr. Luketich did not require a referral and our insurance paid for a SECOND OPINION.  A second opinion is recommended Brad.  That way your diagnosis will either be confirmed, or else some additional suggestions as to how to best deal with your particular diagnosis may emerge. 

           Now Brad, to be totally honest, I’m concerned about these statements.  You write—“Still don't know stage or many other details. Had a stint placed in so I could swallow better but still not able to eat very much.  Had CT scan in the hospital and also have some nodules in my lungs.

           From letters written here previously few have had any major improvement in eating after having a stent placement.  Some have complained of excessive coughing and back pain just to name a couple.  As for the lung nodules, I pray they are not found to be cancerous.  The PET/CT scan will be the determining factor in what treatments will be given. In any event, finding the very best doctors that are trained and “experienced” will be to your advantage.  Experienced thoracic surgeons in large medical hospitals that major in Esophagectomies are best.

           So I will tell you that we went to UPMC not knowing what to expect, but after a careful review of my husband’s complete record, and an examination by Dr. Luketich himself, my husband was pronounced a “good candidate” for the MIE.  We “flew home on the wings of an angel”, made hasty arrangements for a dear friend to take care of our 4 young grandchildren in our custody at the time, and went back to UPMC for a Minimally Invasive Esophagectomy on May 17, 2003.  William was in ICU for one day, moved into a step-down unit on Day 2—moved out to the regular floor on Day 3—passed a Barium Swallow test on Day 4, and released from the hospital on Day 5.  On Day8, we boarded a bus and went downtown shopping!  Ever since that time my husband has been a model patient for this type of Esophagectomy. Granted everyone does not do this well right off the operating table, but newbies need to know that there are success stories of survivors, thank God!

           So the first thing we would want you to know is that there is a more invasive (TransThoracic - TTE) Esophagectomies, often known as “open” surgery.  And then there is the least invasive, the Minimally Invasive- MIE) surgery.   Unless you have mitigating medical circumstances, the choice should be yours to make.  If surgery is warranted, and the surgeon you are presently dealing with does not know how to perform an MIE, I would suggest you seek a 2nd opinion with one that is versed and experienced with the MIE.  At the University of Pittsburgh Medical Center the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY is now their “routine” surgical procedure.  Rarely do they perform “open” surgery on an EC patient anymore. 

           Now Brad, there is oh so much more I could tell you, but for the time being, I will tell you that there are success stories.  Needless to say, this is a perilous journey, but by being informed about this cancer, and “owning it”, your anxiety will be lessened.  The less time lingering near the “land of denial” will serve you well.  You sound like one who wants to truly know the best way to attack this monster.  The more you know, the more confident you will be about the best steps to take.  Make a list of questions that you have and discuss them with your doctor.  Our doctors always took the time to put us at ease, and never treated us as a “number.”  You are as deserving as the next patient waiting to see the doctor.  You need to feel confident that you are getting the best advice possible, and that you “understand” all those big words the doctors use.  So don’t be shy. 

           Knowing what to expect and still maintaining a positive attitude will serve you well.  Lastly, my husband would be delighted to share his experience with you personally if you want to talk to him.  Below my name I will post a letter written by a good friend of mine named “Sherri”, whose husband was diagnosed with Stage IV at the age of 48.  Her husband, Jim, lived 2 years after his diagnosis.  At the time of diagnosis, he was the picture of health, and then all of a sudden, just like you and my husband, he learned he had Esophageal Cancer.  Sherri would be delighted for me to share anything she wrote during her time on this discussion forum.  Her contributions were invaluable, and I have saved most everything she ever wrote and have saved it in my own personal file.

          So Brad—wish it were as simply as saying “Cheer up—don’t worry—everything’s gonna’ be fine—but I believe that would not be fair to say at this point since you don’t really know what you are facing.  But as always, begin this journey with the attitude that you’re gonna’ make every effort to know all you can, find the best doctors, become a survivor,  and aspire to help others along in their journey for years to come.  We are pleased to be able to help new patients along the way.  We like to think of ourselves as just a couple of beggars telling another beggar “where to find a piece of bread!”  God bless you as you start this journey, Brad.

 Wishing you the very best,

 Loretta (&William) Marshall, EC Stage III (T3N1M0), Minimally Invasive Esophagectomy at UPMC May 17, 2003—now celebrating 14th year of remission with no evidence of disease (NED). 

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 (Letter from my friend Sherri) - “"APRIL 15, 2010 - 6:29 P.M. - FOR THE NEWLY DIAGNOSED

           You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one, with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual, and that they don't know you as an individual.  Since coming on in June of 2009, I have read many stories whereas the patient, or the spouse, is afraid to confront the doctors, or to get a second, or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

            Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

           Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

          When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on "I should haves," or "I could haves," it's too late for that. Get going on the cure or the treatment.  You can still lead a productive life.  Push yourself and do not give up hope.  Ever!!!

           Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us. We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

           You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success.  We have our "not-a-surgical-candidate" patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

            Good luck and best wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others. You are never alone!

  Sherri"
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 1.  http://www.cancer.gov/types/esophageal/hp/esophageal-treatment-pdq#section/all

 NIH Esophageal Cancer Treatment–Health Professional Version (PDQ®)

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 2.   http://www.gastrojournal.org/article/s0016-5085(08)01431-5/fulltext

 HER2 Amplification in Micro metastatic Esophageal Cancer Cells Predicts Prognosis - Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential. The mode of action of Herceptin is unique in that it activates the body’s immune system and suppresses HER2 to target and destroy the tumor.

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 3.  http://www.roche.com/media/store/releases/med-cor-2010-10-21.htm

 FDA approves Herceptin for HER2-positive metastatic stomach cancer…First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers…”

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

 “Esophageal Cancer Information Center

 Knowledge is power. Are you facing a new diagnosis, recurrence, living with metastatic disease, or supporting a loved one through their cancer journey? The Cancer Connect Esophageal Cancer Information Center has current, evidence-based information for you. Get the facts about esophageal cancer early detection, treatment, and survivorship, and stay up to date with ongoing esophageal cancer research that could impact your treatment decisions through our daily cancer news…”

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 5.   http://chemocare.com/chemotherapy/drug-info/default.aspx

 Chemotherapy Drugs and Drugs often used During Chemotherapy.  I find this link most informative.  It will list side effects of each chemo drug, and how to best cope with them.

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 6.  http://www.healthline.com/directory/3dbodymaps

 A great resource that gives 3-dimensional views of all the body parts, so you can understand the closeness of one organ to another.

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 7.  http://www.cancerresearchuk.org/about-cancer/what-is-cancer/how-cancer-can-spread/where-cancer-can-spread

 Good information on what cancer is and how it spreads.

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