KellyInBoulder~U were wise 2 have the MIE-Clinical trials say tri-modal treatment is best! Life's to

LorettaMarshall

 

Dear "Kelly in Boulder"

May I say welcome to our EC family.  Your letter about your husband's successful MIE surgery brought so many thoughts to my mind, I thought I would answer them on a separate topic here.  Your original letter can be found here:  "https://csn.cancer.org/comment/1638511#comment-1638511 

 Aug 26, 2018 - 9:30 am - 

Caregiver for spouse diagnosed in early 2018"

_________________________________________________________________  

Kelly, it surely does help to know of others who are successfully “fightin’ on”.  It’s a new world for us as caregivers and patients.  As a caregiver, I know the emotions that you feel.  My husband and I are “one” and when he was diagnosed with EC cancer, I felt I had cancer too.  (Adenocarcinoma @ the Gastroesophageal junction (GE).  After all, what would I do without him, and what would he do without me?  After hearing the “foreign” word Esophageal Cancer, we were thrust into a whole new dimension of life, never to be exactly the same again.  After the word cancer, came another thought, “Does this mean death?”  Who survives this?  Can we meet some of them and find out what they did right?  And so here we are!

            You are so right.  It’s good to share our experiences.  There is nothing as depressing to a patient as to feel they are one of the few who have Esophageal Cancer and they are never going to “make it.”  Granted, there will always be a question of recurrence—let’s don’t kid anybody.  But there are those who “make it” and never have a recurrence.  That’s the reason we survivors are here to share our stories.  We weep with those that weep and rejoice with those that rejoice.  We’re not “whistling past the graveyard” pretending everything will always be okay, but neither are we burying our head in the sand, and refusing to take ALL the necessary steps to have the best outcome possible.  To each his own, but I shudder to think of those who are taking a big risk when they refuse surgery, after the scans have shown “no evidence of disease.”  Clinical trials have borne out the fact that those who have “tri-modal” treatment, most often consisting of “neoadjuvant chemo/radiation and then surgery” survive the longest.

            My husband’s surgeon was so right in insisting that we should go “all the way” and even if pre-op treatments indicated no evidence of disease, that surgery would STILL be necessary.  We didn’t dispute his words.  After all, we weren’t the first EC patients that he had performed surgery on, and found that in some instances there actually was MORE cancer than was shown on the PET/CT scans.  So a word to the wise here should be sufficient, and I’m glad that you were wise to go ahead with the esophagectomy even though tests indicated that the cancer had been totally eradicated. 

            On a different note, I have a very dear friend diagnosed with another type of Cancer in January of 2018.  He went through some rough times but after chemo and radiation, the scans showed that he was NED.  The surgeon scheduled the operation this past month.  Naturally we were all elated.  There was only one problem—acttually the cancer was NOT gone.  When the surgeon made an incision she found more cancer in two other major organs.  Talk about devastated.  They went in with full expectations of having a successful surgery for one of the worst cancers one could have.  Hours later the wife would be told, “We just don’t understand how this happened.  The scans were clear.  But now it is Stage IV.  We can do more chemo but successful surgery is out of the question.” 

            Talk about devastation and heartbreak—it is so sad.  That is why I say you were so wise to complete the cycle of tri-modal treatment.   I’ve read of some here who say they will take their chances.  That’s their prerogative.  We’re here to share our stories and so far I’m not reading letters from people who were diagnosed with Esophageal Cancer at an advanced stage, as is EC III, and are bragging about their survival.  A few months out from a scan that may indicate NED is nothing that I would trust personally.  Just like William’s surgeon and his oncologist agree—they begged us—“Please don’t rule out surgery. 

            And in another case just this year, a young man had a successful esophagectomy, but during surgery, when the lymph nodes were examined for residual cancer, indeed there was some.  The surgeons said they did not think it necessary to have any adjuvant (after) chemo follow up.  Although the dear wife wanted him to take more chemo he refused her pleadings and instead took (may I say) the “ill-advice” of his doctors.  Now you can guess the rest.  He is now dealing with a recurrence and this all happened in a period of no more than 6 months.  So for anyone thinking there are many options, there are none better than choosing to “go all the way” when fighting this monster. 

            Also I would agree with PaulT that weight loss is a given after an Esophagectomy because of the limited oral intake.  It is rare to hear that a surgeon doesn’t put in a “J” tube during the surgery, precisely for that reason.  So don’t be afraid to ask for one to be placed even now, to prevent weight loss.  One needs lots of energy to recover. 

I must say that I take issue with those who say that Esophageal Cancer patients who have surgery are left with a debilitating life.  Once more I agree totally with “PaulT” who asks “what debilitating life?”  After my husband’s MIE surgery, he was in and out of the hospital in 5 days.  We were downtown Pittsburgh shopping on Day 8, and traveled in 3 different states around Pittsburgh while recuperating.  We stayed in Pittsburgh for a long time after the surgery for continued checkups rather than travel back & forth from Virginia Beach to Pittsburgh.  I’ll settle for 16 years of additional life any day over refusing surgery for fear of a debilitating life afterwards.  Sleeping in an elevated position for the rest of his life, and eating smaller portions of food at one time, is no biggie when it comes to still enjoying life together as a couple.  We are blessed.    

            And as I always like to say, Dr. James D. Luketich pioneered the Ivor Lewis Minimally Invasive Esophagectomy in the mid 90s and today, it is “king of the hill.”  It carries with it the least complications, shortest hospital stays, and quickest recovery normally.  Now there are always exceptions but if anyone is contemplating what type of surgery is best, totally laparoscopic is always best.  Now there can be extenuating circumstances sometimes that may not permit one to be able to have the MIE and the OPEN has to be a substitute, but for the most part, the MIE surgery is the way to go.

            Now a word about your husband’s MIE surgery.  I know that Mayo Clinic in Rochester, MN is ranked #1 for gastric surgeries and I’m so pleased that you went to Mayo.  Since both the clinics in Rochester and Phoenix are almost the same distance from Boulder, I’m not certain which one your husband went to, but your story is unique in some ways. This “feeding” schedule is absolutely new to me. 

            Your husband is “fresh out of the hospital” and I’m surprised that he had no jejunostomy feeding tube placed during surgery, although I’ve read behind some other thoracic surgeons who say “sometimes their patients go home with no feeding tube.”  Usually it is placed during surgery to insure that the patients have adequate intake of nutrition while recuperating.  It is placed in the second section of the small intestine known as the Jejunum, thus the name “J” tube.  After all, my husband’s first “meal” was 2 tablespoonsful of Cream of Wheat.  That amounted to a lot of weight loss during the first 9 months.  But then again he was overweight and needed to lose the weight.  Since then he has maintained the same weight level within a 10# range.  He isn’t “fat” anymore.  He went through the usual readjustments that all patients go through but he quickly regained his energy level.  He did all the driving when we were away from home.  And believe me, we were on a SECOND HONEYMOON!  Nothing like a life-threatening cancer experience to make you appreciate the mate God gave us is there?  My husband and I are closer together than ever before.  Life takes on new meaning and PURPOSE once we’ve encountered seemingly insurmountable difficulties.  And I would be remiss if I didn’t credit our faith in the Lord as a life-sustaining factor in being where we are today.  Some have said to me, “God is a crutch” that I don’t need.”  So be it—well and good for them if they don’t feel the same need that we do.  But we draw strength from our faith and it has carried us through this far.  For us, God is supreme.  And I hope no one objects to the mention of God, after all we are all here to tell our stories and how we are faring.  As for me, a terminal Ovarian cancer patient myself, I draw great strength from God’s presence even though He hasn’t seen fit to heal me.  He has promised me grace for my trials.

            Now as for the adjustable beds, you made a good decision.  We didn’t purchase one at the first, but now I wish I had.  Even with a foam wedge and pillows, my husband finds himself slumped down much further in the bed than he should be.  (Now I’m saying we need one.  He says no bother.  I say, YES.  So we’ll see who wins this one!)  Sleeping flat is a sure recipe for acid reflux in the night.   Moreover, not adhering to the rule, no eating right up to the time one goes to bed.  Best advice is to eat no later than 3 hours prior to bedtime.  And even then the type of food one eats will make a difference in the “digestive factor.”  When the acid comes up, it takes about an hour or so for the burning to subside, and there’s just no quick fix for that.  Once you’ve eaten what you shouldn’t have eaten, the stomach always has the “last word.”

            There’s just one more thing you mentioned.  You mentioned your husband’s coughing.  Might I share one thing with you about coughing and possible causes.  The place where the organs are rejoined—the anastomosis—can sometimes have a tiny ridge of “scar tissue” in that area.  My husband developed a “clearing of his throat and a slight cough” just a couple of weeks after his surgery.  He mentioned it to Dr. Luketich.  Dr. Luketich explained about the tiny ridge of scar tissue using the example of a cup and a saucer.  The cup being the gastric tube, and the saucer being the ridge of scar tissue.  He said that something as small as saliva could lodge on the edge of that tiny ridge of scar tissue and produce a cough.  Sometimes food might lodge there as well.  In my husband’s case, it was saliva.  He kept trying to cough and clear his throat, but still it persisted.  So Dr. Luketich recommended a slight dilatation of the new gastric tube.  This is done on an outpatient basis, and doesn’t have any side effects except possibly a sore throat for a few hours.  The surgeon said this is a common occurrence.  So you might want to check that out with your doctor.  My husband only needed two dilitations (sometimes called dilations) early on and had no problems from then on. 

            Now there is another problem that can occur but isn’t something that I’m suggesting your husband has.  Dr. Luketich also explained that often he has to do some repair work when a surgeon has actually gotten the “gastric tube” twisted a bit during the anastomosis process.  One can only imagine that this would cause an ongoing problem were that to occur.  Mind you, I am not suggesting that is the cause of your husband’s cough.  People with a twisted gastric conduit will have difficulty in swallowing their food.  If they are having trouble on a continual basis, then they should have a Second opinion as to the cause.   Frankly, I wouldn’t want the same surgeon who twisted it to do any “adjusting!”  I say that just because this can happen, and Dr. Luketich says that it does happen.

            So Kelly, thank you for coming on today and sharing your experience with us.  We, who are “veterans” to this procedure have learned much along the way, and if you have other questions, most likely some of us will know something that can or should be done to help alleviate it. 

            Life is good and we hope for you and your husband continued “onward and upward” in returning to a normal life filled with joy and happiness and good health.

Sincerely,

Loretta (Wife of William, EC Stage III, T3N1M0, DX November 2002, MIE surgery at University of Pittsburgh Medical Ctr. (UPMC) on May 17, 2003.)

    ______________________________________________________________________ 

1.  https://www.asge.org/home/for-patients/patient-information/understanding-eso-dilation-updated

Understanding Esophageal Dilation - What is Esophageal Dilation?

Esophageal dilation is a procedure that allows your doctor to dilate, or stretch, a narrowed area of your esophagus [swallowing tube]. Doctors can use various techniques for this procedure. Your doctor might perform the procedure as part of a sedated endoscopy. Alternatively, your doctor might apply a local anesthetic spray to the back of your throat and then pass a weighted dilator through your mouth and into your esophagus.

Why is Esophageal Dilation Done?

The most common cause of narrowing of the esophagus, or stricture, is scarring of the esophagus from reflux of stomach acid occurring in patients with heartburn. Patients with a narrowed portion of the esophagus often have trouble swallowing; food feels like it is “stuck” in the chest region, causing discomfort or pain. Less common causes of esophageal narrowing are webs or rings (which are thin layers of excess tissue), cancer of the esophagus, scarring after radiation treatment or a disorder of the way the esophagus moves [motility disorder]…”

_____________________________________________________ 

1.      https://www.livestrong.com/article/484996-bile-and-fat-digestion/

“…The Basics

Bile is a digestive fluid that consists of cholesterol, bile acids, water, potassium, sodium and bilirubin – a waste product formed from the breakdown of red blood cells. Bile, which is produced by the liver and stored in the gallbladder, plays a vital role in the digestion of fats. According to Colorado State University, humans produce 400 to 800 milliliters of bile per day.

Release of Bile

By the time digested food reaches your small intestine, it is referred to a chyme, a mixture of partially digested food and digestive juices, such as stomach acid. When the chyme enters the duodenum, the upper portion of the small intestine, the muscles of your gallbladder wall begin to contract. This rhythmic contraction releases bile into the common bile duct, the passageway that connects the gallbladder to the small intestine. In addition to bile, the pancreas releases lipases, which are digestive enzymes that are vital to fat digestion…”

____________________________________________________________ 

2.      https://www.healthpages.org/anatomy-function/anatomy-function-digestive-system/

 “Anatomy and Function of the Digestive System

February 20, 2018 By Cindy Schmidler …”

_________________________________________________________________________ 

3.      https://medlineplus.gov/ency/patientinstructions/000294.htm

Diet and eating after esophagectomy

______________________________________________________________ 

4.      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…”

________________________End of references__________________