Has anyone NOT had an Esophagectomy after Chemo and radiation?

Pheebes, 

There are people here who have had chemotherapy and radiation and then not had surgery. Some did not have surgery because they had other health issues that precluded surgery. Others did not have surgery because they chose not to for various personal reasons.

I think almost every oncologist that specializes in esophageal cancer will tell you your “best” chance for a long term remission is “tri-modal therapy” and by tri-modal therapy they mean chemotherapy, radiation therapy, and surgery. Most people who have completed chemotherapy and radiation therapy will have a PET or CT scan a few weeks after they have completed their last treatment. If that scan indicates they had a good response to treatment and does not indicate any metastasis to other organs or lymph nodes in areas distant from the primary tumor, then they normally proceed to surgery if there are no other physical issues. Some people find that the scan shows that they have had a “complete response”; in other words the scan does not find any indication of cancer. However, even in those cases where the scan indicates a complete response; when surgery is performed and the removed surgical tissue is sent to pathology for review, frequently cancer cells are found buried below the surface.

Each of us has to make a decision about whether we want to risk the odds of really having a “complete response” or not. Of course the surgery is not without risk and challenges as well. When I had surgery I contracted an in hospital infection in my surgical incisions that significantly complicated and extended my recovery time.

That being said however I am very happy I completed the surgery. It was difficult but I am happy that I did everything I could do to enhance my chances of having a long term remission. It has been six years and I am still being blessed with clear scans. Admittedly there are some life style changes required after surgery, mostly related to the amount I can eat at one time and how often I need to eat.

When you talk to a surgeon you will get surgical recommendations….that’s what they do.

But when you talk to an oncologist that specializes in esophageal cancer I think you will get a more balanced perspective.

I also recommend reading the treatment guidelines published for patients by the National Comprehensive Cancer Network. You will find them here: http://www.nccn.org/patients/guidelines/esophageal/

I know this is a difficult decision, one best made with all the facts at hand.

Wishing you the very best as you complete your treatment.

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
Five Year Survivor

Hello,

Not having the surgery is an alternative that is open to you.  Assuming your PET scan shows that you had a complete response to the chemo and radiation, the benefit of the surgery is to hopefully prevent a future recurrence, not necessarily to treat this occurence.  That said, it is considered of such high importance to minimize the odds of a recurrence that the esophagectomy is almost always recommended if the patient is strong enough to withstand the operation.  EC comes back at a high rate and is generally fatal the second time around.  That is why such a priority is placed on reducing the chance of a recurrence.  Electing to forego the surgery is your choice, but in most cases it isn't the wise choice.

I had chemo and radiation together, then the surgery and my doctors still had me do a "bonus" course of chemo afterwards.  The idea was to go across the battlefield and bayonette the corpses just to make sure they were really dead.  I had had a complete response to the chemo/radiation, showed no residual cancer when they checked what was removed in the surgery, had six months of "bonus chemo", tested clean for 2+ years and still had a recurrence.  I'm still glad I had the surgery.  It was the best bet I could've made to give myself the strongest shot at a longer life.

I don't want to sound like the surgery is an easy choice, it is in fact major big deal stuff.  There are frequently complications (I had pneumonia for 2 months, which was brutal) and there is a decided difference between your life before and after (eating, drinking, sleeping, weight loss, reflux, etc...).

It is certainly possible to win at blackjack by hitting on 15 against the dealer's 6, but that's not what the odds say is the smartest play.  And you're not playing for some $25 chip this time.

Wishing you good results on your PET,

Ed

Hi Pheebes,

I was recently diagnosed with esophogeal cancer.  All the literature I read lead me to believe that an esphogectomy was in my future.  I read up on esophagectomies and could not think of a more horrible course of treatment.  But let me start at the beginning.

I am a male.  In 1997, at 34 years old, I experienced lower extremity edema.  My wife pointed out that it was unusual for males to swell up in their legs like that and asked me to go to the emergency room to get checked out.  Turns out they found a tumor in my chest.  I was scheduled for an open lung biopsy during which the surgeons sampled the tumor and did what is called a frozen section.  This frozen section seemed to indicate that I had Hogkins Lymphoma...made sense...34 year old male with no othe cancer risks.  They sewed me up and waited for the full pathology report.  About 2 weeks later I got the bad news that I had non small cell adenocarcinoma of the lung.  There was a lot of talk, studying and drama for a while but when the dust settled, the only way to 'cure' my cancer was a right pneumonectomy...complete lung removal.  Along with that surgery, which if you're counting is two time my chest was opened up, I elected for adjuvant chemotherapy and radiation.  That was 19 years ago.

One thing they don't talk about much is cancer treatments causing other cancers...we focus on that all important 5-year survival rate.

Recently, I was diagnosed with squamous cell esophageal cancer.  Again, I've got none of the risk factors...I don't drink, I don't smoke, I don't have reflux...but by golly, Ive got T3N0MX esophageal cancer.  I've gone to Johns Hopkins in Baltimore for their take on treatment.  I was told....

Because my chest was opened up for an open lung biopsy AND then opened up for a pnumonectomy AND then radiated, they can't be sure that they can 1) find my esophagus in the scar tissue and mess that is now in my chest.  They suggested I have a half esophagectomy whereby they remove my esophagus, sew my tube shut up top and sew me shut at the stomach.  I would need to eat using a J-tube and would have a drain installed in my neck so that saliva could drain into an ostomy bag.  This would potentially be a permanent situation.  There is a 'possibility' that after a year or more of healing, that they could 'fashion' some sort of esohphagus on the outside of my abdominal cavity that would be visible going up my stomach and connect it to my neck but they couldn't be sure that it would work.

Recently I went to MD Anderson for their opinion.  The  surgeon told me that he thought I should postpone this surgery, primarily because he was fairly certain that I would not survive it.  I failed to mention that my previous cancer treatment, specifically radiation, caused congestive heart failure.  He suggested chemotherapy and radiation treatment to see if that works.  Not being one for simplicity, I went to visit with the rad/onc folks and was told that I am most likely not a candidate for radiation therapy since my esophagus most likely received the maximum allowable dosing in 1997 and to radiate  it any futher could cause it to break down and disintegrate.

By the way, my Johns Hopkins surgery was scheduled for today!  August 5th, 2016!!

My wife and I are heading to MD Anderson next week to undergo further testing and to get final work on whether or not I can be radiated.

The morale of my story....That esophagectomy that was, at one time, the most horrible situation I could imagine, is something I wish with every fiber of my being that I could have such a simple, life extending procedure.  Especially given the optional surgery offered by Johns Hopkins that is, by the way, still on the table with MD Anderson.

So Pheebes, I may be the guy who has esophageal cancer and doesn't get an esophagectomy.  It's not because I don't want one, it's because I've ruined my body with prior cancer treatments.  I hope you'll think about the stories that our collegues are sharing with you...it's not an easy decision but the alternative is not very good either.

Best of luck to you...pat

Paul,

My wife and I do plan on asking about immunotherapy.  I've asked about Keytruda in particular and was told by the physicians assistant for the surgeon that that was a question I needed to pose to an Oncologist.  I'm hoping to meet with one this coming week.  I completely understand what you're saying about qualtity v. quality of life and to say that I haven't been wrestling with that very topic would be a lie.  I think it would be easier to digest if I were 15 or 20 years older but at 53 I'm really having a rough time.  One thing that my thoracic surgeon at MDA said when we last met was that I could make it up to six years if I don't receive any treatment.  Either way, I hope to have more answers next week and will share them with you all.

Thanks again!

pat

You may find my story about 'My Battle with Esophagel Canceer' interesting. Had the Ivor-Lewis procedure after being pronounced cured of the cancer. Was unable to eat/sip water for over a year and a half? It is a collection of updates, pictures and anecdotes from my FB page! I am now able to eat!

http://thetanseys.webs.com/Cancer Update.htm

siutis12 said:

I said no to the surgery
After receiving a partial favorable response to chemotherapy and radiation I decided against the surgery. I interviewed patients who had the surgery and patient's and caregivers who said no to the complicated procedure. It became apparent that those who elected to have the surgery experienced a side effects that led to a significant reduction in the quality of life for the unknown chance of extending the life. Others like me are only interested in the quality and no quantity of life. I had rather have one year at 75% than five years at 25%. I'm an athlete and I am not interested in the further reduction in lifes quality. I interviewed 12 patients around the country who refused the surgery. Without fail, their doctor told them they were unwise to refuse the surgery and would be dead in less than a year. Some of these patients were alive more than three years later. I tracked down one bodybuilder like myself who was told in 2001 that he would be dead by the end of the year unless he had the surgery. I interviewed him at his place of employment where he was working full time. That was 17 years ago and he is still alive. Ask your doctor if he would have that surgery??? I or my caregivers will let you know how long I make it. I'm a born again Christian and once I close my eyes for good I'm going to be wondering why I fought so hard against dying.

I had Carbo/Taxol 5 Times (once a week) with 25 concurrent radiation treatments in May of 2018.   Subsequent pet scans and biopsies via EGD showed no evidence of cancer, but I went ahead with the surgery to remove half of stomach and half of esophagus as recommended.  GLAD I DID.  Real time pathology during surgery showed no evidence of cancer, BUT subsequent analysis of removed tissue showed rare, isolated, but poorly differentiated cancer cells in the tissue (not good).  

Surgical recovery has been easier than I expected.  To those that wonder whether surgery is worthwhile if all looks clean, my experience says do it if you are otherwise in good health.

I went through two rounds of chemo and 26 radiations.  My cancer was T2N0M0.  PET and ESU results came back negative last month and these will be repeated in 3 months.  I should be very happy but I am being told that if I have surgery that my voice box will have to be removed; this is always on my mind.  However, I did have another opinion in which the surgeon told me that in surgical terms my tumor is light years from my voice box.  I am seeking a third opinion to break this polar opposite "tie".

Does anyone know of others in my situation or any thoughts? 

I glad to see that some of the participants here went on with no surgery and doing fine.

Sincerely,

howdyrichard

My mom didn't have one, but only because her diaphragm became paralyzed sometime during the chemo/radiation treatment phase. Because of that complication, she wasn't a candidate.

Dear “K”

“Three months later PET scan negative but biopsy results came back positive.”  Needless to say you find yourself between a “rock and a hard place.”  All I know to say is that cancer in the Esophagus never “stands still” or lies dormant.  It moves on to other organs if nothing is done.  This is why surgeons tell their patients that even though the neoadjuvant chemo/radiation treatments came back “clean” for the presence of tumor, it is still necessary to have the surgery because there could still be residual cancer in the Esophagus not picked up by the scan.  So as I read your letter, it seems that the extent of your wife’s present disabilities and her ability to withstand surgery is the big question. 

So herein lies your dilemma.  Since you didn’t state how “limited” your wife’s condition is as a result of her stroke, I can only suggest that you have a SECOND opinion.  If your wife were scared away by the horror tales of how one will never be the same after an esophagectomy, I can only imagine that she decided against it.  This idea of skipping the esophagectomy if the pre-op scans come back negative for cancer is something I find rather recent.  And for those who have been “clean” for 3 months, may I say that is not an indication that everything is “A-OK”.  So far, we’ve not been inundated with patients who tell us that they “opted” out of surgery, and years later are still doing just fine.  That would be the exception and not the norm.

So I would suggest that she go for a SECOND opinion to a major cancer facility that lists the Ivor Lewis Minimally Invasive Esophagectomy (MIE) as one of their “specialties”.  It was developed first in the mid-90’s by Dr. James D. Luketich at the University of Pittsburgh Medical Center.  (UPMC).  That is where my husband had his successful MIE back in 2003 and is still cancer free as of today, October 16, 2018.  His recovery was “unremarkable” in that he had absolutely no difficulties adjusting to a new way of sleeping (elevated) and eating (several smaller meals per day.)  Now no matter the type of surgery, there will be the “adjustment period” to become accustomed to a new permanent lifestyle.  But those who opt for the MIE make a much quicker recovery.  Now my husband was 65 when first diagnosed back in 2002, but he is now 81 and he is not “limited” in any way as to his activities except that “age takes a toll and we no longer have the energy we had 16 years ago.

So Kenne I know this has to be a difficult and trying time, but once a person has been accurately diagnosed with Esophageal Cancer, the best possible approach is neoadjuvant (pre-op) chemo/radiation and then an Esophagectomy.  So it seems your decisions will have to be made on the level of disability your wife is living with at the present time.  And the “stage” of her cancer is of prime importance as well.  But when a person is not limited by medical problems that precludes surgery, it is always the best course of action.  If one has opted not to have the esophagectomy based on horror tales, I would say “think again.”  There can be a great quality of life after an esophagectomy.   But let’s be honest, there can be difficulties, and recurrences but those are the chances one has to take if they want to live longer.  The very best thing you can do is to consult with a top hospital.  I would NOT have any of the more invasive surgeries.  The MIE is “king of the hill” and only a person’s “medical limitations” might rule that out.  I would hope that your wife’s physical condition would not keep her from having the minimally invasive totally laparoscopic procedure.  But then again, that is something only you, your wife and her surgeons could accurately decide upon.

Once more, if you’re wondering about the surgery leaving your wife more debilitated, we don’t consider eating smaller meals and sleeping elevated to prevent gastric acids working their way back to the top of the new gastric tube a “disabling” factor.  If you ask me, enduring and completing the pre-op chemo and radiation with all its possibilities for problems is half the battle.  The surgery would be the “icing on the cake.”  However, in your case, obviously it all depends on your wife’s present “disabilities.”  I wish I could be more helpful but can only say how sorry I am that you and your wife find yourselves in this predicament.

Sincerely,

Loretta Marshall (Wife of William who had successful MIE May 17, 2003 and has had absolutely no problems since then.)

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1.      https://www.upmc.com/Services/esophageal-lung-surgery-institute/treatments/esophageal-surgery/minimally-invasive-esophagectomy

“Minimally Invasive Esophagectomy at UPMC

Recently, doctors in the United States have been diagnosing more cases of esophageal cancer​. Obesity and long-term irritation from gastroesophageal reflux disease (GERD) are believed to be contributors to this increase in new cases.

If you have esophageal cancer​, you may be a candidate for a surgical treatment called Minimally Invasive Esophagectomy (MIE). At the UPMC Esophageal and Lung Surgery Institute, our surgeons are some of the most experienced in the world at performing the MIE procedure.

What Is Minimally Invasive Esophagectomy (MIE)?

MIE is surgery to remove cancer in the esophagus. The surgery involves small incisions through which surgeons insert a tiny camera and can remove cancerous parts of the esophagus and stomach. 

The surgery may be performed with robotic assistance, providing surgeons with greater dexterity and the ability to access hard-to-reach areas of the body. 

Surgeons at the UPMC Esophageal and Lung Surgery Institute use a multidisciplinary approach to determine the best combination of chemotherapy, radiation, and surgical treatment for each patient with esophageal cancer.

Benefits of Minimally Invasive Esophagectomy

The goal of MIE is to help you get back to a normal, cancer-free life. Minimally invasive techniques have made the procedure safer and recovery times shorter, providing patients with improved quality of life.

Compared to traditional open esophageal cancer surgery, using minimally invasive techniques — including robot-assisted surgery — greatly:

• Reduces the risk of complications
• Lessens pain
• Shortens hospital stays

​For MIE surgery, a patient’s experience and outcome depend heavily on the expertise of the physicians and medical team performing the surgery. UPMC surgeons are among the most experienced in the world, having performed nearly 2,000 MIEs…”

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2.     https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103614/

“…Objectives

Our primary objective was to evaluate the outcomes of minimally invasive esophagectomy (MIE) in a large group of patients. Our secondary objective was to compare the modified McKeown minimally invasive approach (videothoracoscopic surgery, laparoscopy, neck anastomosis [MIE-neck]) with our current approach, a modified Ivor Lewis approach (laparoscopy, videothoracoscopic surgery, chest anastomosis [MIE-chest]).

Methods

We reviewed 1033 consecutive patients undergoing MIE. Elective operation was performed on 1011 patients; 22 patients with nonelective operations were excluded. Patients were stratified by surgical approach and perioperative outcomes analyzed. The primary endpoint studied was 30-day mortality.

Results

The MIE-neck was performed in 481 (48%) and MIE-Ivor Lewis in 530 (52%). Patients undergoing MIE-Ivor Lewis were operated in the current era. The median number of lymph nodes resected was 21. The operative mortality was 1.68%. Median length of stay (8 days) and ICU stay (2 days) were similar between the 2 approaches. Mortality rate was 0.9%, and recurrent nerve injury was less frequent in the Ivor Lewis MIE group (P < 0.001).

Conclusions

MIE in our center resulted in acceptable lymph node resection, postoperative outcomes, and low mortality using either an MIE-neck or an MIE-chest approach. The MIE Ivor Lewis approach was associated with reduced recurrent laryngeal nerve injury and mortality of 0.9% and is now our preferred approach. Minimally invasive esophagectomy can be performed safely, with good results in an experienced center…”

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  3.  https://www.hopkinsmedicine.org/healthlibrary/conditions/adult/digestive_disorders/esophageal_cancer_treatment_22,EsophagealCancerTreatment

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