Post esophagectomy - newbie

Hello Fightingon,

I had all of the symptoms your husband is currently experiencing after surgery. The cough will probably last about two months or so. My surgeon just suggested I take OTC cough medicine and it seemed to help.

I also had nausea, particularly in the morning while I was on a feeding tube. Many people find if they reduce the speed of the feeding pump it helps to reduce nausea.

I also had periods of rapid pulse rate, dizziness, and feeling hot. Those episodes were typically associated with dumping. While “dumping” episodes frequently result in diarrhea, that is not always the case. The term “dumping” refers to the rapid emptying of the stomaphagus into the small intestine with unprocessed food.

All of these symptoms will improve with time. Unfortunately, the first two months or so after surgery are often difficult, but it does get better. I had "significant" pain after surgery for a couple of weeks although I had the traditional “open” surgery so my incisions were much larger than your husband’s incisions. The "soreness" and tightness in my right chest area lasted almost a year before it started to improve. Being in the hospital for 10 days after a minimally invasive surgery suggests there were some complications from surgery? Most minimally invasive surgeries are out in 3 to 4 days?

I had one positive lymph node found in my post-surgery pathology so I did have chemotherapy after surgery. There are various medical opinions about the value of chemotherapy after surgery but I am glad that I completed mine.

The first couple of months after surgery take some patience and you are always waiting "for the other shoe to drop" but things do get better with time.

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 - Eight Year Survivor

Hello T,

I was 40 also my first time around with EC.  I had chemo/radiation and an esophajectomy.  The pathology from surgery showed that I had a complete response to the chemo/radiation.  We still decided to do a course of bonus chemo just to bayonnet the cancer corpses.  I was fairly young and was looking to live for decades, not just a few years, so we were as aggressive as possible.  Turns out I had a recurrence anyway, but I would still do things the same way again.  I wanted to give myself the best shot at long term survival.  The thing I would point out is that the dose of chemo during radiation was an "activating dose".  It wasn't full strength it was designed to complement the radiation, not to be it's own treatment.  When I had chemo post surgery, that was a full strength dose, but I was willing to do anything to minimize the chance of a recurrence.  

As far as the side effects your husband is running into, this is a major surgery and even in the best case scenario, there are going to be bumps in the road.  The key is to work with your doctors and try to manage them as best as you can.  Good doctors will be able to help a LOT.  My experience was different than your husband's but I still hit my fair share of bumps.  I was in a lot of pain after surgery, but that was mostly because I had pneumonia that lasted for about a month and a half.  I couldn't lay down (nor even inclined) for almost two months.  I was popping opiods by the bucketfull.  Then the pneumonia went away and the pain subsided.  I was back at work full time (desk job, not actually doing anything physical) about two months after surgery.  About four months post surgery I started up the bonus chemo and that ran about six months.  

This story is from 2008-2009, so you can tell that it ends well.  I'm ten years out from a stage III diagnosis and doing well.  There have been bumps in the road (including a stage IV recurrence), but I'm still here and that's what counts.

Best Wishes,

Ed

siutis12 said:

I said no to surgery

I flatly refused surgery due to the life long side effects.  I'm sticking with chemotherapy and radiation and the superior quality of life.  I had rather have one year at 50% than 5 year's at 25%.

siutis,

what are this life long side effects you are talking about? It's your decision but I had my esophagectomy in February 2016 and I will admit I do have to eat smaller meals and more often and sleep with my head elevated but that does not mean my quality of life is bad. My strength is back, I am back working a full time physical job and played 18 holes in the Florida heat this past weeken. So overall by no means is my quality of life suffering, sometimes inconvenient yes but quality being 25% is a big definite NO. Life is good. 

Paul

PaulT said:

No to surgery

siutis,

what are this life long side effects you are talking about? It's your decision but I had my esophagectomy in February 2016 and I will admit I do have to eat smaller meals and more often and sleep with my head elevated but that does not mean my quality of life is bad. My strength is back, I am back working a full time physical job and played 18 holes in the Florida heat this past weeken. So overall by no means is my quality of life suffering, sometimes inconvenient yes but quality being 25% is a big definite NO. Life is good. 

Paul

 

 

No “debilitating lifestyle here either Paul!”   

Dear PaulT

It means so much for a survivor like yourself to share their story of success.  There are many “newbies” on this site wondering which way to turn and will they make it out of this alive.  You darn right it is frightening, but facing this cancer is “not for the faint of heart.”  I’m so glad to read of so many who surveyed the situation, took advice from other survivors and “went for it!”  “Doing nothing” is certainly a formula for failure.  And in the case of an Esophageal Cancer diagnosis, It is often the story that along the way we enjoyed good health but actually took it as a “given”.  Didn’t we eat the right foods and were moderates when it came to lifestyle?  We didn’t smoke or drink and expected to live to a ripe old age.  Usually that ripe old age was measured by how long others in your family were accustomed to living.  So for my husband the mark would be around 85.  For me it would be about 110.  My grandmother lived one month short of 110.  She gave birth to 13 children.  They were poor but happy.  Now I can’t imagine what it was like to be living when the first flight took place, or when the first automobile was made.  Yes she lived a simple life.  Grandma was never sick until she had a fall at age 105 and broke her hip.  She went to the Surry Hospital in Mt. Airy, NC which incidentally is the home of Andy Griffith.  There doctors “fixed her hip.”  While there she developed Pneumonia, but that was no problem.  She “got over that” as well.

You know in “apple country” in the mountains of Virginia, drying apples is still a part of life.  And anybody that hasn’t tasted a “fried apple pie” has missed out I say.  When I go back to visit my relatives, I always stop at one of the local markets along the Blue Ridge Parkway and buy some fried apple pies.  And yes, I learned how to make them from my grandma and my mom.  I love to cook, but that’s getting off the subject here. 

Grandma was still peeling apples at age 102 and placing them in a pan over top of her space heater to dry.  I remember my uncle putting big red knobs on her burner knobs so she could be certainly when the burner was turned completely off.  Ah the wonderful memories roll in when I think about my grandmother Dawson.

She was a tower of faith.  She had a front porch with a gate on which the words were written, “The Lord is My Shepherd.”  She always said “goodbye” with the words, “Live for the One Who died for you.”  Yes my Grandma left me a legacy of faith and determination to meet life’s challenges head on, and not run from them.

“Half a loaf is not always better than none.”  Settling for chemotherapy and radiation is a “loaf half-done” when it comes to the best treatment “recipe” for Esophageal Cancer.  Only in the very earliest of stages is surgery not always recommended.  So we can safely say that surgery for the most part is “baked in!”  Very few people discover their EC early.  It is so often disguised and mistaken for just a case of bad heartburn for which the primary physician often prescribes something like Nexium.  In fact, it has been shown that Nexium actually masks the symptoms of Esophageal cancer by calming the symptoms of heartburn and/or gastric reflux. 

Fast forward to my world of today.  When my husband was first diagnosed with Esophageal Cancer, it was a total shock.  After all we only went to the doc to see why my husband had a pesky hiccup.  Little did we imagine that hiccup had an alternative spelling—Esophageal Cancer.  In a moment our world of “normal” was turned upside down, and we felt we were hanging upside down.  One of the things we did do was return to see so many of our family members in the mountains.  Don’t we all want to go back and recall a time when things were calm?  So we made one last trip to the mountains to a familiar place that held so many fond memories, before we made the trek to the University of Pittsburgh Medical Center for something called an “Ivor Lewis Minimally Invasive Esophagectomy.” 

Little did we know that the surgeon’s advice was “spot on!”  He said, “First you need to have chemotherapy and radiation and then surgery in that order.”  He said, “Even if the pre-op scans show that the treatments show that the cancer has been totally eradicated, that may actually not be the case.  Sometimes cancers are too small to be picked up on a scan.”  The article referenced below my name bears out the treatments that are recommended depending on the Stage and type of Esophageal Cancer one has.  So we went through all the treatments knowing from the very beginning that surgery was part of the “whole-loaf” deal.  Indeed clinical trials have proven that those who have the “tri-modal” treatment fare better and live longer, and many never have a recurrence, although we did have to consider a recurrence in the equation. 

So now I’m looking back over the last 16 years since my husband’s successful surgery.  He was 65 at the time, and is now 81.  He quickly regained his energy.  By month 3 we were back in the mountains to rejoice with our friends and family members there.  At that time my mother still had a second home there.  We often stayed there when we left the big city to “steal away” to a quiet place.  I have a picture of my husband mowing my mother’s hillside lawn and it had only been 3 months since surgery.  It was a "gasoline powered push" mower, not a riding lawn mower.

So Paul, You and my husband are enjoying a good life post Esophageal Cancer.  It is an inspiration to read of yet another survivor.  Our stories hold hope for others who are just winding their way through this maze and aren’t sure they can “get out alive”.  YES there are survivors, and like you, my husband is NOT DEBILITATED in any way.  Now sleeping elevated is a great way to rest as opposed to lying flat 6 feet under I always say. 

Being given 16 years of good health to finish raising 4 of our grandchildren has been a blessing.  We have participated in all their youthful activities, graduating from a tricycle to a bicycle to a car--“T” ball, Little League, Basketball, Baseball, Soccer, Football, swimming, skateboarding, etc.  Seeing all of them graduate from High School and some going on to College, then welcoming 3 greatgrandchildren into the world has NOT been debilitating.  We have been blessed. 

So may you continue to have fun in the hot Florida sun as we do here in Virginia Beach.  We have been richly blessed and want others to know that they may well have a similar success story. 

The old saying, “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain” is still so true.  Let’s pray that our stories of success will offset other “doomsday” stories that sometimes appear here.  My advice to all newbies—stay the course and don’t give up the fight before you begin!  Don’t settle for “half a loaf!”

Congratulations again Paul.

Loretta

(Wife of William who was diagnosed in 2002 with EC Stage III (T3N1M0).  He underwent neoadjuvant (pre-op) chemo of Carboplatin/5-FU plus 25 external beam radiation treatments.  He then had the Ivor Lewis Minimally Invasive Esophagectomy at the University of Pittsburgh Med. Ctr. on May 17, 2003, performed by Dr. James D. Luketich, the pioneer of that totally laparoscopic procedure.  There were no complications and William is still cancer free these 16 years later!  To God be the glory.)

____________________________________________ 

1.     https://emedicine.medscape.com/article/277930-treatment

[My note:  This link is excellent and covers all the bases.  Every segment should be read by anyone wishing to know more about the treatments that are recommended when one has been diagnosed with Esophageal Cancer.]

“ESOPHAGEAL CANCER TREATMENT & MANAGEMENT

Updated: Apr 30, 2018 - Author: Muhammad Masab, MD; Chief Editor: N Joseph Espat, MD, MS, FACS  more...

 Approach Considerations-

 Treatment of esophageal cancer varies according to stage—locoregional (stages I-III) versus metastatic cancer (stage IV)—and  histologic subtype—squamous cell carcinoma (SCC) versus adenocarcinoma.

National Comprehensive Cancer Network (NCCN) treatment recommendations for esophageal cancer include the following ^[81] :…”

___________________________________________________ 

2.     http://www.post-gazette.com/home/2011/08/01/Heartburn-meds-tied-to-cancer/stories/201108010183

 “Heartburn meds tied to cancer

Popular drugs may mask risk for disease

  David Templeton - Pittsburgh Post-Gazette dtempleton@post-gazette.com

Aug 1, 2011

12:00 AM

Drugs such as Nexium, Prilosec and Prevacid that control production of stomach acid and treat heartburn, reflux, peptic ulcers and related conditions are some of the most popular medications on the market.

But long-term use of these drugs, known as proton pump inhibitors, can have unexpected consequences, a new study shows.

Blair A. Jobe and his research team at the University of Pittsburgh School of Medicine say the severity of symptoms for GERD, or gastroesophageal reflux disease, has an inverse relationship with the presence of Barrett's esophagus, a precursor to a lethal form of esophageal cancer known as adenocarcinoma.

The concern is that good symptom control does not reduce cancer risk but actually increases it.

The study, published online by the journal Archives of Surgery, also raises questions whether proton pump inhibitors might cause the cancer, whose incidence per million has risen sixfold from 1975 to 2001, a time when PPIs came on the market with increasing use. It's the fastest growing cancer in the nation, outpacing melanoma, breast and prostate cancers.

In the Pitt study, patients taking PPIs who reported no severe GERD symptoms had significantly higher odds of having esophageal cancer as compared with medically treat patients who reported severe symptoms.

This finding, it says, may explain the failure of current screening procedures that dictate when primary endoscopic examinations are done. Those exams that involve a scope to inspect the esophagus usually are prescribed based on symptom severity. But Dr. Jobe said only 5 percent of patients who develop esophageal adenocarcinoma are detected by screening efforts, with the remaining 95 percent having symptoms related to a more advanced and less curable cancer stage.

Doing a screening endoscopy on patients with GERD even for those without severe symptoms, might be a wise choice, the study concludes, because PPI medications could be masking the severity of the problem.

Dr. Jobe said other studies he has participated in show that less expensive endoscopy procedures can be used effectively to test for Barrett's esophagus and esophageal cancer without the need for sedation or loss of work time.

In the study, an increasing number of severe GERD symptoms actually were associated with decreased odds of esophageal cancer. Those taking PPIs proved to be 61 percent more likely to have Barrett's esophagus or cancer if they reported no typical GERD symptoms of heartburn, regurgitation and difficulty swallowing or dysphagia, with 81.5 percent more likely to have the cancer if they reported atypical GERD symptoms of throat-clearing, excess mucus, "lump in the throat" sensation or cough. Those high rates are in comparison with people using PPIs who reported severe symptoms.

It indicates that while PPIs reduce the acid that causes GERD symptoms, the drugs don't cure reflux, the source of their problems.

Reflux most commonly results from a flawed esophagus sphincter muscle that allows stomach juices to leak into the esophagus. By stopping the stomach from producing acid, PPIs change stomach chemistry and allow non-acid gastric juices that can include bile to flow into the esophagus without producing symptoms.

Steven DeMeester, an associate professor at the University of Southern California's Department of Surgery, and an expert in gastroesophageal problems, said those taking PPIs reduce symptoms but don't cure the disease. A stomach devoid of acid might allow the symptomless reflux of bile that could pose higher risk of causing cancer.

The Pitt study and other research have raised the question of whether PPI use is causing the higher cancer incidence. It also highlights the need for people on the drugs for 10 years or more to have endoscopies.

"Because their symptoms are absent, insignificant or atypical, these patients do not seek medical care or are not selected for endoscopic screening" and serious disease can progress without awareness, the study says.

Because PPIs "are extremely effective in reducing or eliminating symptoms, patients may be overlooked for screening under the false assumption that their disease is adequately treated."

The Pitt study indicates that people using PPIs to reduce stomach acid but still having severe symptoms likely are suffering from problems other than reflux.

For that reason, using symptom severity to guide screening strategies can fail to diagnose those at highest risk of cancer and increase disease incidence, Dr. Jobe said.

The death rate for esophageal adenocarcinoma within five years of diagnosis typically is about 85 percent. This type of cancer kills about 8,000 people per year in the United States, but the increased incidence concerns doctors about risk factors, many of which include symptom duration, diet, Caucasian race, male, older age and having GERD with the presence of a hiatal hernia, a condition where the top portion of the stomach has migrated into the chest.

PPI's role in the climbing incident rate is the focus of future research.

"This is a very important study, and you have to look carefully to understand the implications," Dr. DeMeester said. "It's very compelling and powerful data that has reinforced concern about the potential link between PPI use and carcinogenesis," or the beginnings of cancer.

"You can't take PPIs without recognizing that changing the physiological environment of the stomach by doing so and maybe the long term risk of doing that," he said. "they are very effective for control of reflux symptoms. Just because they make the symptoms go away doesn't mean there's nothing to worry about."

Lack of symptoms doesn't mean lack of disease.

"If medicines work, you truly have [reflux] disease," Dr. DeMeester said. "If you are more than 10 years on the drugs, a person should think seriously that the danger of esophagus problems and cancerous changes might be occurring, and you should have an endoscopy to see if you have Barrett's esophagus."

Blair Hains, director of brand corporate affairs for AstraZeneca, the maker of the best-selling PPI medication Nexium, said clinical symptoms for patients do not correlate well with acid-induced esophageal disease.

"The conclusion of the study is not surprising since those with severe disease are likely to seek treatment sooner than those with fewer or no symptoms," he said.

_________________End of references______________

KellyinBoulder said:

Caregiver for spouse diagnosed in early 2018

Thanks so much to all on this thread for sharing your experiences. It helps to know others are out there fighting this diagnosis too. My husband was diagnosed with Stage 3 esophageal and gastric cancer (GE Junction extending into the cardia of the stomach) in March 2018. He had five weeks of chemo and proton radiation therapy at the Mayo clinic through early June, and then had minimally invasive esophagectomy on August 16th. They did not place a feeding tube. He had no food or drink for the first five days, then after successful esophogram results, clear liquids for one day, full liquids the next and then began on post-esophagectomy solid food diet the third day. He was released from the hospital on the 9th day after surgery and is home, where he is adjusting to eating more frequently and dealing with some pain, but not a lot. After the fourth day after surgery, he wasn't using much of the pain medication, just at night. He is very, very tired and the cough keeps him up at night so it's been tough to rest. We purchased adjustable beds after we returned home from chemo/radiation treatment, so he is sleeping at greater than 30 degrees' incline. He didn't show any cancer on post-chemo/radiation PET scan or in EGD biopsy but as others have noted, that doesn't mean the cancer was fully eradicated, so he decided to go forward with surgery. It's tough recovering but hoping that he will be feeling better in another month. Hope all of you (and loved ones) continue to recover and feel well, and those of us who are caregivers continue to get the rest and tlc we need to continue to be strong supporters. Take care!

Hi Kelly,

sounds like your husband is doing well in recovery as he is already only taking pain meds at night to sleep. I was wondering why they didn't put in a feeding tube as to be honest he is the first person I have heard of not getting one and we survivors usually lose a lot of weight after having a esophagectomy as this is our lifeline not only for our nutrition but also for our liquid medicines . If he is losing a lot of weight I would ask his Surgeon or Oncologist about this. Other than that it sounds like he is doing just fine. Losing weight is a constant battle. I'm 3 years out and still battling the weight issue. All the best, Paul 

KellyinBoulder said:

Thanks Paul!

Thanks so much for your response, Paul! He lost weight during chemo and radiation but gained some back before surgery. He doesn't have any more he can spare but he is eating well and getting lots of protein in 4-6 small meals per day now. I think he will be okay if things continue to go well, but I can certainly understand how a feeding tube is helpful for many. We will keep an eye on it and if he can't gain weight we will talk to the doctors at his follow up. We both agreed that there is no way he will be able to get back to his pre-cancer weight (which wasn't too high to begin with) but hoping he can get to a good stable weight again. We talked with two surgeons, and the first was planning to place a feeding tube during surgery, but the second (that we went with) told us that he doesn't do that in patients at the time of surgery unless he anticipates problems, but does so afterward if needed.

Wishing you all the best and thank you again for sharing your experience!!

Dear Kelly ~ I have chosen to put my answer to you at this link:  https://csn.cancer.org/node/317741 - I’ve titled it-- “KellyInBoulder~U were wise 2 have the MIE-Clinical trials say tri-modal treatment is best! Life's too precious 2 take a gamble!”  So please read my reply there.  And please write anytime you have a question.  No doubt someone here will be able to help.  Since I’m currently in chemo treatment for my own terminal Ovarian cancer, I may not “feel” well enough to answer you each time you write but I know there are others here who will be able to help as well. 

May God continue to bless you and your husband with success.  It’s great to be alive!

Loretta (Wife of William Marshall (now age 81) – a 16 year survivor of Esophageal Cancer Stage III, (T3N1M0) who also had the Ivor Lewis Minimally Invasive Esophagectomy (MIE) May 17, 2003, by Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC).  We celebrate my husband’s cancer-free survival EVERY MOMENT OF EVERY DAY! 

P.S.  For all my "old" friends here, this is our latest picture taken in the last month.  The smiles are genuine!