Upcoming surgery anxiety

It is complicated but many of us have recovered and moved on

Hi AK Girl,

It is very understandable to be anxious about esophageal surgery. It is a very complicated surgery and should be done by someone who does MANY of these surgeries each year. This is not a surgery for your typical thoracic surgeon in a small hospital. Since you had previous gastric surgery I assume they will be using the “open” Ivor Lewis approach in order to navigate any residual scar tissue that may be in the way from your previous surgery. You said University of Washington,  and they do have a surgical center that specializes in treatment of esophageal cancer.

Some questions that I would ask the surgeon you are considering would include:

• How many of these surgeries do you do annually and what are your outcome statistics?
• Do you believe my modified stomach is a viable stomaphagus, or are you planning a different approach?
• Specifically, what surgical approach do you plan on using (open or laparoscopic)?
• Where can I find the infection and outcome statistics for the aftercare facility I will be using?

This is a very complicated surgery and you want someone who specializes in this particular kind of surgery and an aftercare facility that knows how to manage any potential complications.

However, you will find many of us here who have had this surgery and have returned to a full life with some minor lifestyle changes.

Wishing you the very best of luck as you complete your esophageal cancer recovery process.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

Life may not be the party we hoped for, but while we are here we might as well dance!

"AKGirl"~Most EC patients R scared~rightfully so~it's MAJOR!

Dear “AKGirl”

 You should know that none of the folks I know, either as caregivers or EC patients, went into this Esophageal Cancer surgery with assurance that it would be a total success.  If one did so, perhaps they had conducted little research, and went with the idea that “ignorance is bliss.”  I will tell you that when I insisted that my husband and I go see our doctor, our local internist, because my husband had a persistent hiccup, we were NOT prepared for the diagnosis.  Our doctor said that he didn’t know what the cause was but that it was “gastric related”. With that he placed a call to a gastroenterologist.  So the next day we were at the gastroenterologist’s office for an endoscopy.  We couldn’t spell endoscopy nor did we know how to spell it.  We didn’t even know what it was.  But we would learn very quickly the results of the test.  Actually, the gastroenterologist knew immediately when he performed the endoscopy.  However, no one told us to stay around to see and talk with the doctor.  The nurse sent us home, with instructions for my husband not to drive or eat anything for about 12 hours and he would be okay.  That’s what we did.

 The following day (Day 3) our phone rang at home around 2:30 P.M.  The conversation went like this when I answered the call.  My husband and I both have computers, and we both happened to be in the computer room at the same time.  So I answer and say “Hello.”  Then the fateful conversation went like this.  “Mrs. Marshall, this is Dr. Ryan.  I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has CANCER!”  He then went on to use words that I can now spell and know the meaning of but didn’t at the time of our initial phone conversation. 

 Our hearts sank when we heard the word cancer.  I immediately associated it with “DEATH”, and that is usually what most patients think of when they are first diagnosed with cancer.  So I will just fast forward to let you know that my husband was initially diagnosed (11-2002) with “Adenocarcinoma @ the Gastroesophageal junction (GE), Stage T3N1M0.  He had neo-adjuvant chemo of 5-FU/Carboplatin, 25 radiation treatments, and then the Ivor Lewis Minimally Invasive Esophagectomy on May 17, 2003.  Dr. James D. Luketich at the University of Pittsburgh Medical Center, pioneer of the MIE back in the mid-90’s, performed the surgery.  It took approximately 7 hours.  My husband was in the hospital for only 5 days.  There were no anastomotic leaks.  He had a Jejunostomy feeding tube inserted at the time of surgery.  This enabled him to maintain a level of nutrition while recuperating.

 As we all know, there are 2 main adjustments that the patient will have.  One will be that they will sleep in an elevated position.   Two-they will eat many small meals rather than 3 main meals as we in the states are usually accustomed to.  However, you will adjust.  Some people are satisfied to sleep on a wedge.  If so it should be at least 12 inches to keep the chest elevated so as not to fight acid reflux during the night.  Had I known my husband would be a survivor 15 years now, I would have invested in a bed that elevates like Paul61 did.  That’s the best solution. 

 Also it is best not to lie down immediately after eating.  And also it is best to drink between meals, and not with a meal, since the new gastric tube’s intake capacity is extremely “limited” in the beginning.  It will take months to acclimate to the new way of eating.  Even with the feeding tube (J-tube), weight loss after surgery will be normal.  But those are just for starters.  Those patients who have a laparoscopic esophagectomy, barring complications, will have a quicker recovery.

 So the most encouragement I can give is to say that there are survivors, and though it is extremely major in nature, there are qualified thoracic surgeons who are proficient at performing esophagectomies.  Paul has raised some very important questions which every patient should ask.  However, when we are “newbies” we usually don’t know what questions to ask.  But there are some EC “vets” here at surviving, and now “know the ropes.”  My gut instinct is that you are so nervous about the surgery, and more so because of the complications you think might result because you have had gastric bypass surgery years ago, that you’re probably content to stay where you are.  But I do hope that during the time you researched this cancer, that you asked the appropriate questions and are happy with your choices.

 As I’ve stated before, I’m not quite sure where you will be having the surgery since I see the University of Washington listed as in Seattle.  But if I read correctly, the surgeons there work with thoracic surgeons at Barnes-Jewish Hospital in St. Louis, MO.  So I’m not sure where you will be having the surgery, nor do I know the name of your surgeon.  Will it be surgeons that primarily operate out of Barnes-Jewish, although your primary workup and neo-adjuvant chemo/radiation was done elsewhere? 

 So it is my hope that you’ve “done your homework” and that “fear of the unknown” is the only remaining problem.  I do hope you were tested for HER2+.  If you’ve done your very best to make yourself aware of what an Esophagectomy involves, and you seem to say that you have, then you will just have to “sweat it out and pray it out” like all the rest of us before you have done.    

 So stay tuned, and write whenever you have a question.  I note that basically Paul61 and “DeathorGlory (ED)” and I monitor this site quite closely.  While there are others that write in from time to time, basically I would say we are a “trio” that have had different life experiences relatively to Esophageal cancer, and as such have had different kinds of surgeries.  We care deeply about those who write here. 

 Our main concern is that patients have done their research prior to having surgery, and that they have always had a second opinion, and chosen a major medical facility that has as one of their specialties, Esophagectomies, and even then preferably “totally laparoscopic.”  Sometimes there will be several surgeons in one given location that are trained to perform different types of Esophagectomies.  It is important to learn the different types, and never make the mistake of choosing a hospital just because you “like the doctor” and “he/she is close to your home!”  In your case, neither Missouri nor Seattle are in your backyard.  I’ve circled December 11, 2017, and put your name there.  I’ll certainly say a prayer for you. 

 Wishing you every success,

 Loretta (William’s wife)

 P.S.  Below are multiple web links relative to University of Washington and the services they perform.  Not knowing how much research you’ve done, I will basically give you links so that you can peruse them if you wish.  But it is now December 1, 2017, and I’m thinking you’re not anticipating changing your plans.  There’s no need trying to tell you everything involved in recovery now.  Adjusting to a new normal as a post-op EC patient takes time, so as you encounter a problem or have questions you can always come back here.

 And if you do, it would be good if you would come back and post your additional questions under this same thread.  That way we won’t have to “play hide and seek” to find you.  We can easily miss a posting.  Often a person will post inside another thread, and sometimes I miss them.  It’s frankly easier to follow the patient’s progress if we have a chronological posting rather than start a new topic forum each time you have a question. 

•  [One more thing]  I see that the thoracic surgeons at Washington University mention working with the thoracic surgeons at Barnes-Jewish hospital in St. Louis, MO.  So I am not quite certain of the exact physical location where you underwent your neoadjuvant chemo and radiation.  Sometimes I am seeing “Seattle” and sometimes I’m seeing “St. Louis.”  In case you have any doubt, here is a specific video showing an Esophagectomy on a female who had a “gastric bypass” 5 years prior.  So I’m glad you have found a hospital with experienced surgeons who are no strangers to laparoscopic esophagectomies. https://www.youtube.com/watch?v=eKDAUUvsl_I

 It is true that the “tri-modality” approach to Esophageal cancer provides the best chance of longevity and carries with it a better survival rate.  The efficacy of the tri-modal approach has been borne out by many clinical trials.  So you are indeed making the right decision to not give up the possibility of having an Esophagectomy. 

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 1.      http://www.uwmedicine.org/health-library/pages/laparoscopic-esophagectomy.aspx

• “HOME -  HEALTH LIBRARY - Laparoscopic Esophagectomy - ​​​“Overview

Esophagectomy is the partial or complete surgical removal of the esophagus. It is most often performed to remove esophageal cancer or benign lesions. In cases involving cancer (adenocarcinoma, typically, and sarcoma), the procedure is recommended when the disease is thought to be contained to the esophagus and not found to have metastasized. Often the procedure follows courses of chemotherapy and radiation, which might also be continued postoperatively…

For decades, surgeons have approached this procedure via open thoracotomy, a large incision in the chest. Today surgeons can approach laparoscopically, manipulating their instruments through a series of tiny incisions in the patient’s upper abdomen while viewing with a tube-based camera inserted in the patient. Surgeons must have advanced skills for laparoscopic surgery. Patients also are carefully evaluated to determine whether they are sufficiently healthy to undergo surgery. 

Via open or laparoscopic approach, this surgery and anesthetization is complex because of the anatomical structures involved. Depending on the length of esophagus to be removed, surgeons may reshape the stomach into more of a tube and move it up into an esophageal position. Alternately, a segment of large intestine may be used instead. Surgeons might need to make additional incisions at the chest or neck to sufficiently access the structures involved. 

Patients spend a week or more in the hospital after surgery. In some cases, recovery can take up to six months. Postoperative complications emerge in up to 30 percent of patients – though they may be minor. 

Patients should expect to change dietary habits after surgery, eating smaller portions of soft foods and avoiding high-fat and spicy dishes, and not taking liquids with meals. Many patients find it easier to puree meals. Patients often find it helpful to eat more slowly and to stand or sit upright for a few hours after meals to minimize reflux and regurgitation…”

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2.  http://www.uwmedicine.org/services/esophageal-gastric-diseases/health-library

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3. http://www.uwmedicine.org/services/esophageal-gastric-diseases

“…Our center is one of only a few such sites in the United States that specialize in diagnosing and surgically treating esophageal and gastric diseases. When medications and first-line treatments fail to relieve troubling symptoms, our surgeons use minimally invasive techniques in every possible instance. This approach minimizes the discomfort associated with surgery and helps our patients recover more quickly…”

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4.       https://health.usnews.com/best-hospitals/area/wa/university-of-washington-medical-center-6910750

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5.       https://health.usnews.com/best-hospitals/area/wa/university-of-washington-medical-center-6910750/rankings

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6.       http://mis.wustl.edu/

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7.       https://health.usnews.com/best-hospitals/area/mo/barnes-jewish-hospitalwashington-university-6630930

“Overview

Barnes-Jewish Hospital in Saint Louis, Mo. is ranked No. 12 on the Best Hospitals Honor Roll. It is nationally ranked in 12 adult specialties and rated high performing in 3 adult specialties and 9 procedures and conditions. But then again, even though different hospitals rank highly in different specialties, Gastroenterology & GI surgeries are ranked as a separate specialty.  Different hospitals rank differently for Esophageal Cancers, so that’s an important distinction… 

Rankings and Recognitions

To help patients decide where to receive care, U.S. News evaluates data on nearly 5,000 hospitals in 16 adult specialties, 9 adult procedures and conditions and 10 pediatric specialties. To be nationally ranked in a specialty, a hospital must excel in caring for the sickest, most medically complex patients. The ratings in procedures and conditions, by contrast, focus on typical Medicare patients. Hospitals that do well in multiple areas of adult care may be ranked in their state and metropolitan area. Barnes-Jewish Hospital is ranked nationally in 12 adult specialties. It also achieved the highest rating possible in 9 procedures or conditions. Read more about how we rank best hospitals.

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8.      https://health.usnews.com/best-hospitals/area/mo/barnes-jewish-hospitalwashington-university-6630930/rankings

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9.      https://health.usnews.com/best-hospitals/rankings/cancer

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10.  https://health.usnews.com/best-hospitals/area/mn/mayo-clinic-6610451/gastroenterology-and-gi-surgery

Mayo Clinic in Rochester, MN ranks #1 in Gastroenterology and GI surgeries, the category in which Esophageal Cancer is ranked.  You can check out the ranking for GI surgeries at both Barnes-Jewish and University of Washington, Seattle.  They will differ, even if it is one of their specialties.

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11.   http://www.cardiothoracicsurgery.wustl.edu/Thoracic/Esophageal-Cancer

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12.   https://siteman.wustl.edu/treatment/cancer-types/esophageal/treatments/

There are different types of treatment for patients with esophageal cancer, depending on the stage of the cancer and the person’s overall health. For each type and stage of esophageal cancer there are standard treatments and there are clinical trials that are evaluating promising new treatments. At Siteman, each cancer has a wide range of treatments that can be used alone or in combination to give the best outcome for your specific cancer. That’s why careful diagnosis is so important.

As part of a research medical center, physicians at the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis have access to a wide range of clinical trials to test new therapies as they emerge…”

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13.  https://www.bing.com/videos/search?q=transhiatal+esophagectomy+video&qpvt=transhiatal+esophagectomy+video&FORM=VDRE

 This is an entire page of different thoracic surgeons talking about how they perform the Transhiatal Esophagectomy, the Transthoracic (OPEN) and the Ivor Lewis Minimally Invasive Esophagectomy (MIE). 

You say you have researched this cancer, so I don’t know if you’re up to viewing “these surgeries” or if you would prefer to just “read” about them.  But this is a good page for learning more about the laparoscopic esophagectomy known as the Transhiatal Esophagectomy (THE).  I note that one of the videos is by a female doctor and she performs a “hand-assisted” Transhiatal Esophagectomy.  While in others, I see that it is a totally robotic Transhiatal Esophagectomy.  Probably these videos will mean more to you “after surgery”, rather than now, since you are already understandably scared about the surgery.  Who isn’t?

 I won’t try to go into detail about the differences between the surgeries, except to say that the “Transhiatal (THE)” is much less invasive than the Ivor Lewis Transthoracic (TTE) Esophagectomy commonly known as the “Open Esophagectomy”.   Yet the “Transhiatal” is more invasive than the Ivor Lewis Minimally Invasive Esophagectomy (MIE) which requires only 5 band-aid size cuts, one of which is a small incision on the right side of the chest to remove the diseased Esophagus. 

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