Julie~Basic things 2 expect AFTER an Esophagectomy-Initially DIET will B changed along w/permanent s
Well good evening Julie –
First of all, this post is so lengthy, I’m going to put it on a separate post for 3 reasons.
First because others will be answering you on your original post, https://csn.cancer.org/node/311322 -"What Should We Expect? "
This letter is extremely lengthy. However, I think the information is helpful. We learned by experience all that is discussed below.
Secondly, there are many “lookers/lurkers” and often not as many postings on this site, but this information will be “universally” applied to patients who are blessed to be able to qualify for an Esophagectomy, no matter the type. How do I know that? On each new topic line there will be a number on the lower right hand side that gives the number of times this article has been read. So that’s how I know many people are seeking information that may never actually post anything.
And thirdly, I want everyone to know that there are 3 main types of Esophagectomies ranging from the oldest which originated with Dr. Ivor Lewis back in the mid-forties. It is known as the “Transthoracic” (TTE) Esophagectomy and consists of at least 2 massive incisions. Although all EC patients who undergo surgery will have the same type of “recuperative” experience, the TTE or OPEN surgery lends itself to more possibilities for problems.
There is also another surgery known as the “TransHiatal” Esophagectomy (THE). It was introduced by Dr. Mark Orringer at the University of Michigan back in the 1970s. It is an improvement over the OPEN EC.
Ahhhhh….NOW there is a totally laparoscopic Esophagectomy consisting of small Band-Aid size incisions, first introduced and pioneered by Dr. James D. Luketich at the University of Pittsburgh Medical Center, back in the mid-90s. (Ivor Lewis Minimally Invasive Esophagectomy – (MIE). Today it is the surgery of choice, and has multiple advantages over the other types of surgery. An in-depth explanation of those can be for another separate posting all its own, since your dad has had his surgery, and is now in the hospital.
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And oh by all means, EVERYONE should have a SECOND OPINION. A shocking article was published by Mayo Clinic just recently that indicated few FIRST opinions are totally accurate. Many are absolutely wrong, and the remainder is usually “tweaked” in some respect.
1. http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/
Mayo Clinic says get a second opinion – first ones are frequently wrong
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That said, I’ll now address your specific question. What your Dad can expect now that he is in the hospital beginning his recovery from an Esophagectomy.
Glad to know that your dad—by the way how old is he?—has made it through the pre-op treatments and the Ivor Lewis Esophagectomy. I’m not certain if your dad had the TTE (Open) or one of the other two types—the “Transhiatal” or the “Minimally Invasive”—both of which are derivatives of the Esophagectomy first introduced by Dr. Ivor Lewis. If he were alive today, he would be thrilled to know that the surgery he pioneered has reached the ultimate—totally laparoscopic. That is fantastic. And so for those anticipating surgery, we always recommend seeking a top medical facility that has as one of its majors, the Ivor Lewis Minimally Invasive Esophagectomy. (MIE) Often patients are simply not aware that there are choices as to surgery. Often it really depends on the surgeon that the patient chooses to go to, and whether or not that doctor has upgraded his skills to include the minimally invasive procedure. Then again all hospitals are not the same. Some do not possess the technological advantages and/or the skilled thoracic surgeons that may be found at different medical facilities. So while it’s nice to “like your doctor” that you’ve been going to for years, it may not be the best place for one to be when they’ve been diagnosed with cancer!
The MIE is the surgery of choice now at UPMC. Rarely does there have to be an “open” esophagectomy.
Before I go further, I’ll just tell you that my husband and I are “celebrating” his long-term survival from an MIE at the University of Pittsburgh Medical Center way back in 2003. He was diagnosed at the age of 65, in 2002, with Adenocarcinoma @ the Gastroesophageal Junction (GE). His was Stage III (T3N1M0). He went through neoadjuvant chemo/radiation treatments, then surgery. So you are talking with someone that has “been there—done that” and lived to tell about it to this day. That is the same story we hope to hear from your dad as far as recovery is concerned.
Now it’s hard for me to “make a long story short” as anyone who reads my posts will attest to, so I won’t even attempt it. Your question requires so many answers!
But I will tell you that William had the Ivor Lewis Minimally Invasive Esophagectomy (MIE) which was first introduced back in the mid 90’s by Dr. James D. Luketich. Now you say your Dad had the “Ivor Lewis” Esophagectomy, but there are 3 main ways to perform this surgery, they being the Transthoracic (TTE) which would be the oldest method aka “OPEN”.
Then there is the “Transhiatal” aka (THE) which is less invasive than the TTE.
Then there is the latest totally laparoscopic procedure known as the MIE—the Ivor Lewis Minimally Invasive Esophagectomy. Now all 3 will have the same type after repercussions (adjustments to a new normal) after the surgery. However, the MIE will have the shortest recovery time.
No doubt you will hear from Paul61 who had the OPEN Esophagectomy and is now in his 7th year of survival with no evidence of recurring disease. He can tell you in more detail how his recovery process was because he had 2 massive incisions which caused him to take longer to recuperate. Moreover, he had residual cancer in some of his lymph nodes and had to have “post op” (adjuvant) chemotherapy. Now that’s what I call a “double whammy”. It’s enough just to readjust to a new sense of normalcy from the surgery alone, but to have to undergo chemo even while one is recovering is very difficult. I say that to say this. Am I to assume that your dad had no cancer in any of the lymph nodes (should have been at least 22) removed during surgery for biopsy? In Paul’s case, he had a more difficult time than did William. My husband did NOT have any cancer in any of the lymph nodes that were biopsied for residual malignancy. So it depends on Dad’s final assessment by the surgeon following the Esophagectomy as to how long it might take Dad to return to normal.
Assuming that Dad has no residual cancer, which is the best possible outcome and assuming he does not have any other health problems, the good news is that HE WILL RECOVER. Now at this point, we won’t bother to go into stats as to how long one survives before having a recurrence because that’s not the topic for discussion today. The good news is that there are long-term survivors. My husband and I are delighted to say that he is in “remission” now entering his 15th year because as my oncologist said just two days ago, we don’t use the word “healed”, we say “in remission”. In reality, none of us know when the little cancer monster first worked its way into our system, and we surely do not get “advance notice” before it strikes again. All that said, TODAY IS A DAY OF REJOICING!
As for pain, my husband tolerates pain well, but he said that the first day he felt like he had been “run over by a MACK truck”, but 18 hours later, the nurses had him up and walking. Now don’t get me wrong, he didn’t “jump” out of the bed. Let’s just say he was “forced” against his will, but he dutifully obeyed. This is to prevent problems afterward, like Pneumonia, for instance. And the sooner your dad is up and walking, the better. I venture to say, he will be “up and walking” today. No doubt, just like my husband, Dad will have a morphine pump which he can press when the pain seems intolerable. My husband William was out of the ICU and in a step-down unit on the second day. On the 3rd day he was out on the regular EC ward, and was discharged on Day 5. By Day 8 he was downtown shopping with me in Pittsburgh. We stayed in Pittsburgh for 3 months total. We checked in and out during that time and traveled to other parts of the state, as well as West Virginia and New Jersey. He had his surgery on May 17, 2003, and we’ve been having a “second honeymoon” ever since. And if the Lord takes either one of us today, we have been blessed and cannot complain.
Having said all that, you ask what you can expect. What’s next for DAD?
As far as recuperation, it will depend on which type of Esophagectomy that Dad had. Naturally the OPEN surgery takes longer for the incisions to heal, and carries with it the possibility of infection, etc. Paul61 can tell you about that. William only had 7 Band-Aid cuts, and so there were no big incisions to heal. The incisions for the laparoscopic are just big enough to insert the instruments into the body. Only one incision was about 2 and ½ inches wide because that was where the cancerous esophagus was removed. My husband’s entire Esophagus was removed and the stomach was spliced and reconfigured to make a new gastric tube and reattached at the Pharynx. Now there are delicate pharyngeal (throat) and laryngeal (voice) nerves there. For some patients there has been a voice change when it is removed at the neck area, but my husband did not have any voice changes. At the time my husband’s cancerous esophagus was removed at the neck.
Since then Dr. James D. Luketich has modified the surgery to remove the cancerous esophagus lower down in the right side of the chest, thereby greatly reducing the possibility of injuring either of these two areas. I am going into a bit more detail because many people will read our comments to gain a better understanding of what happens during an Esophagectomy.
Now what can Dad expect? As part of the surgical procedure after removing the diseased Esophagus, most patients, and hopefully Dad, will have a “J” tube implanted in the second section of his small intestine, the Jejunum. This is where the nutrients from the food that we all eat, are finally dispensed throughout the body. And because Dad now has a very limited “intake” capacity, it is necessary for him to keep up his energy. As for my husband, the nutrient prescribed was “Osmalite”. My husband actually slept while the apparatus was “doing its thing.” He also had a small portable unit much like a “fanny pack” that held the nutrient, so that if we wanted to travel during the day, my husband was able to keep up his food intake. Hhhmmm just thought about this—I suppose you could call it “meals on wheels!”
Dad will have a “barium swallow” test done prior to being discharged from the hospital. There are sometimes “anastomotic” leaks where the two organs are rejoined. This can be very dangerous, so he will not be discharged until there are no leaks. My husband didn’t have any, so that was fantastic. Hopefully, your dad will pass that test. That’s the FIRST big test following surgery.
Incidentally, my husband didn’t need anything for pain after the second day in the hospital. My husband only had ice chips until Day 4 when the tests for leaks was given. So when we got home (at the UPMC family home that is), his first meal consisted of 2 tablespoonsful of Cream of Wheat! That’s because the stomach now serves a dual purpose. It will serve you well to read the link below about the stomach. When you understand how the stomach is designed to work, you will understand the biggest “readjustment” problem that the patient has post op. Now Dad “isn’t there yet”, but most likely a problem called “DUMPING SYNDROME” afflicts all the patients post-op, no matter the type of Esophagectomy they “endured.”
So I will give you a link for a post-op diet that Dad will be wise to follow. Nope—it won’t be steak and potatoes—should that be one of his favorites. It’s more like soft baby food, then “junior food”, then regular food and this takes TIME! So one suggestion is “when Dad ventures out away from home—know where the bathrooms are!” I will say, we learned most everything by “experience” and we were NOT prepared for “dumping”. So be forewarned. Dad will “get over it” but I doubt he can “by pass” it! By now you get the idea that I am a “just-tell-it-like-it-is” lady. That way folks don’t have to say, “Hhhmmm wonder what she meant by that!” And it would be a good idea to have a “change of clothes (under & outer)” in the car just in case!
Now because of the limited volume intake, Dad can be expected to lose a good amount of weight in the very beginning. This is not what most people want because most times, they have already lost a considerable amount of weight prior to having surgery because of their inability to swallow. But REJOICE, Dad has made it through surgery. Not all the patients that present with Esophageal Cancer have that luxury. Sometimes they are diagnosed in the very beginning with Stage IV, and that means the cancer has already spread to lymph nodes near or in another major organ. Those are the ones we “hurt for” the most. So count it a blessing to have had the surgery, and just know to expect several months to recuperate.
Now depending on the type of surgery, and Dad’s physical abilities before he came to be diagnosed with this cancer, barring any new problems, he will return to normal. Like I said, my husband and I traveled to lots of places the first 3 months after surgery, but we stayed in the area, because of the frequent follow-ups immediately following surgery.
I will say something that may or may not occur. After a couple of weeks, William seemed to be clearing his throat excessively and coughing. He mentioned it to Dr. Luketich, his surgeon, and the doctor said that this was quite common. He explained that the place where two organs are rejoined are referred to as the anastomosis. (That’s where the term anastomotic leak comes from.) Well Dr. Luketich explained that sometimes a small “ridge of scar tissue” would form around that area, and food and saliva that normally would travel straight down the new gastric tube aka Gastric Conduit, might lay around the “ridge” and cause the coughing sensation, as though you were trying to clear your throat. So Dr. Luketich said, a “dilatation or dilation” should clear that up. It was a mild stretching of that area. William had one about 3 weeks after and one more a couple of weeks later, and after that he has never needed another one. So should Dad begin to cough or clear his throat excessively, this probably will be the reason why, and a dilatation (outpatient procedure) would be in order.
You know that Dad will have to adjust to a new normal, in that he will now sleep in an elevated position. Some people invest in a new mattress that can be elevated to a desired comfortable position. This is to prevent the stomach acids from working its way back up to the throat and causing an awful burning sensation that is described as acid reflux. The reasons are explained in the link that tells about the stomach capacity. There is no longer a sphincter that opens and closes between the Esophagus and the Stomach as there was prior to surgery, now that the two have been “melded, so to speak, into one new gastric tube.”
And also there will be some “no-no’s” like eating and then lying down immediately afterwards. In other words, “no siestas” right after a meal! Last meal of the day should be eaten 3 hours prior to lying down for the night. This will give the “stomach time to do its job.” Dad can violate this at his own risk and peril, I might add. The stomach works 24/7!
As for liquids, dad should drink between meals, and not with meals, because of the limited capacity of the new gastric tube. So it will be a new normal for eating, and he will be eating several small amounts a day, say 6 instead of 3, and drinking his liquids in between. In other words it will be a long time before he can eat a normal plateful of food, as he once enjoyed. That will take months, and to this day, my husband can only eat one plateful when he used to eat two, thus explaining his initial weight of 275!
As for return to energy level, I would say that in 4 months’ time, William’s energy level was back to normal, but it took at least 9 months for his weight to stabilize. He was overweight at 6 ft. and 275#. Post-op he lost 60# during the first 9 months, but since then his weight has stabilized and is in a range between 205 and 215#. Now for some who had already lost a big amount of weight prior to surgery, the weight loss does continue for a time after surgery. Some never get back to their desirable weight. Weight loss can be a problem. The “J” tube is critical to maintaining a healthy diet post surgery. It will be surgically removed when the patient feels he can eat an adequate amount on his own. But we’re alive and that’s the best part!
Well, Janne, I’ve just about “covered the waterfront” in what you might expect for your Dad. I will say that is he wants to send us a private message and give us his phone number, we would be delighted to answer most any question he might have. Believe it or not, we’ve learned more after William’s surgery, than we ever did before.
As for follow-up visits, we used to return to the University of Pittsburgh Medical Center twice yearly for checkups, and then yearly later on. But due to my own medical problems since 2012, William is followed up here locally by our oncologist. He has a consultation, bloodwork and scans done every 6 months. But if we ever have another problem, we would return to see Dr. James D. Luketich to seek his professional opinion on what we should do.
It’s been a pleasure to “talk” with you, and if you have further questions, most often some of us can be of help, because “we’ve been there—done that!”
Here’s praying your dad will adjust in due time with no problems and that his story of survival will be as good as my husband’s story. We all know it’s a “life-changing” experience, but when we come through it we are wiser, more compassionate and more thankful for the simple pleasures of life than ever before. We know the sense of relief now that your dad is “on the other side of this surgery”. We hope that he will enjoy having a “clean bill of health” when it’s all said and done. We also know how relieved you and your family members are. Dad will be hurting for a few days, but as time progresses he will be wearing a smile.
Love and prayers for you and your family,
Loretta (Wife of William whose DX was EC, Stage T3N1M0) neoadjuvant chemo/radiation—then MIE @ UPMC by Dr. James D. Luketich on May 17, 2003. So far William’s PET scans show NED (No Evidence of Disease). That’s a blessing for which we truly thank the Lord.
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“…"The human stomach, distended, holds 2 to 4 liters of food…The stomach of an adult is about 10 inches (25 centimeters) long and can easily expand to hold as much as l quart (0.9 liter) of food…"The stomach is a muscular sac that can contain about 1.5 litres of fluid…"The stomach can expand to hold up to 4 L (4.2 qts.) of food, more than 50 times its empty volume…
Do you remember the last time you said "Ahhhh, I'm too full to take another bite." Many of us will probably stop eating, while others may continue stuffing themselves because it is a buffet and they want to get their money's worth. The ones who stop eating might think that the ones who continue are crazy. How can one's stomach fit so much food? The stomach has a lot of functions and one these is to expand and contract.
This J-shaped organ has very active muscles. These muscles expand and contract depending on how much food is in the stomach. This contraction is a form of mechanical breakdown of the food. The purpose of this breakdown is to increase the available surface area for the chemicals to act on it. The gastric glands of the stomach secrete enzymes that perform chemical breakdown, partly digesting the proteins. Pepsin is the enzyme that breakdown protein. The gastric gland also secretes hydrochloric acid that kills almost all the bacteria in the food. It also secretes mucus that protects the stomach wall from the hydrochloric acid. By the time all the food is mechanically and chemically broken down, the food becomes a semi-fluid substance that leaves the stomach by peristalsis entering the small intestine.
The structure of the stomach is quite unique. It can be divided into four subdivisions: the cardia, the fundus, the body, and the pylorus.
- The cardia is the region that is closest to the heart and is where the esophagus is connected to the stomach.
- The fundus is the region that curves above the rest of the stomach (with respects to a person who is standing upward).
- The body of the stomach is the largest region located in the center.
- The pylorus is the region that is connected to the small intestine.
The cardia and the pylorus have sphincter muscles that regulate the movement of food and fluids. You don't want the hydrochloric acid to back up into your esophagus. When you vomit and have a burning sensation in your esophagus, it's the hydrochloric acid from the stomach that causes it.
The volume of the human stomach varies depending on the person. Generally, human stomachs have a volume about one liter, which is a little more than one quart. Since the stomach has the ability to expand, it can hold much more food. The human stomach can be distended up to four liters, which is more than one gallon. Imagine your stomach to be an empty one-gallon milk carton. There is plenty room for food! So the next time you go out to an "all you can eat" restaurant, remember that there is actually more room than you think that is available in your stomach. But honestly, stuffing oneself to the limit is not very safe or healthy. Don't abuse your stomach because you will need it for quite a long time. Jonathan Cheng – 2000…”
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3. https://www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works
The Digestive System & How it Works
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4. https://medlineplus.gov/ency/patientinstructions/000294.htm
You had surgery to remove part, or all, of your esophagus. This is the tube that moves food from the throat to the stomach. The remaining part of your esophagus was reconnected to your stomach.
What to Expect at Home
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You will probably have a feeding tube for 1 to 2 months after surgery. This will help you get enough calories so that you start to gain weight. You will also be on a special diet when you first get home.
Self-care
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If you have a feeding tube (PEG tube) that goes directly into your intestine:
- You may only use it at night or for periods during the day. You can still go about your daytime activities.
- A nurse or dietitian will teach you how to prepare the liquid diet for the feeding tube and how much to use.
- Follow instructions on how to care for the tube. This includes flushing the tube with water before and after feedings and replacing the dressing around the tube. You will also be taught how to clean the skin around the tube.
You may have diarrhea when you are using a feeding tube, or even when you start eating regular foods again.
- If specific foods are causing your diarrhea, try to avoid these foods.
- If you have too many loose bowel movements, try psyllium powder (Metamucil) mixed with water or orange juice. You can either drink it or put it through your feeding tube. It will add bulk to your stool and make it more solid.
- Ask your doctor about medicines that may help with diarrhea. Never start these medicines without first talking to your doctor.
What you will be eating:
- You will be on a liquid diet at first. Then you may eat soft foods for the first 4 to 8 weeks after surgery. A soft diet contains only foods that are mushy and do not need much chewing.
- When you are back to a normal diet, be careful eating steak and other dense meats because they may be hard to swallow. Cut them into very small pieces and chew them well.
Drink fluids 30 minutes after you eat solid food. Take 30 to 60 minutes to finish a drink.
Sit in a chair when you eat or drink. DO NOT eat or drink when you are lying down. Stand or sit upright for 1 hour after eating or drinking because gravity helps food and liquid move downward.
Eat and drink small amounts:
- In the first 2 to 4 weeks, eat or drink no more than 1 cup (240 milliliters) at a time. It is OK to eat more than 3 times and even up to 6 times a day.
- Your stomach will stay smaller than it was before surgery. Eating smaller meals throughout the day instead of 3 larger meals will be easier.
Alternative Names
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Esophagectomy - diet; Post-esophagectomy diet…”
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5. http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx
Dumping Syndrome Diet
“Dumping syndrome sometimes happens after stomach surgery.
Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heartbeat, and fatigue. This diet will help stop the symptoms of dumping syndrome…”
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6. http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx
“Diet After an Esophagectomy
An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.
What can I expect after surgery?
For the first few months after surgery, you may have problems such as:
§ Weight loss
§ Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)
§ Excess gas
§ Trouble swallowing
Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating…”
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7. https://www.uwhealth.org/healthfacts/nutrition/368.html
“Diet after Esophagectomy
After surgery on your esophagus you will need to follow a special diet because all or part of the esophagus is removed. The stomach is made into a tube and is pulled up into the chest to replace the part of the esophagus that has been removed. The new tube shaped stomach is then reattached to allow food to move from the mouth to the rest of the digestive tract. After surgery your stomach acts as a passageway for food to travel through rather than storing the food you eat. Because of this, you will need to eat smaller, more frequent meals. Your diet will slowly change as you heal. The diet is to help make you more comfortable as you to eat.
Note: Each person tolerates food in a different way. Based on how you are doing after surgery, your doctor may change your diet plan more slowly.
Feeding tube Calories provide the building blocks you need to heal after surgery. This means good nutrition is very important after surgery. Most patients who have an esophagectomy will have a feeding tube put in at the time of surgery. This is to provide you with extra nutrition until you can go back to your regular diet a few weeks after surgery. This tube is called a jejunostomy tube or J-tube. The tube is inserted through the belly and into a part of your small intestine called the jejunum. By using the J-tube your doctor can provide liquid nutrition (tube feedings) for you after surgery until you are able to eat enough food by mouth…”
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8. https://medlineplus.gov/ency/patientinstructions/000181.htm
Jejunostomy feeding tube
A jejunostomy tube (J-tube) is a soft, plastic tube placed through the skin of the abdomen into the midsection of the small intestine. The tube delivers food and medicine until the person is healthy enough to eat by mouth.
You'll need to know how to care for the J-tube and the skin where the tube enters the body.
Follow any specific instructions your nurse gives you. Use the information below as a reminder of what to do…”
[My note: More than you asked for here. This is just additional info re the MIE surgery itself, just in case others who read this post are looking into the different types of surgeries.]
9. http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy
Minimally Invasive Esophagectomy
Drs. James D. Luketich and Katie S. Nason discuss minimally invasive esophagectomy.
10. https://www.youtube.com/watch?v=cjB3w7ovgNE
GTSC 2013 James Luketich Esophageal Anastomosis: How I Do It.
Published on May 31, 2013 - Lectures from the 2013 meeting of the General Thoracic Surgical Club's 26th annual meeting in Naples, FL
[My note: We first learned about Dr. Luketich and the MIE that he had pioneered only 10 days before we were scheduled to have the Ivor Lewis (TTE) surgery. He was giving a lecture in Florida, where William’s sister lives. She sent us a message, and said, “Have you heard of this?” We had not—but the rest is history. We called UPMC, set up an appointment, and the MIE was performed for my husband on May 17, 2003 which accounts for William’s quick recovery. This is a technical presentation to doctors, but after years of learning about the Esophagus, and viewing actual videos of the esophagectomy surgery itself, we understand some of what he is talking about. But understand we are not “medical” personnel, but we like learning about it. In hindsight, we now know what was done on the inside. At first we simply knew that we needed surgery, and were relieved and excited to know that there was a laparoscopic surgery. Dr. Luketich did not require a referral. We simply took ALL our medical records with us. After review there, it was found that William was a “good candidate” for this type of surgery. And that is why we always want newbies just starting out to know what their options are.]
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