Full Esophogectomy or not??

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Hi Everyone:

I have been reading through the boards for the last few hours and am both hear broken and hopeful.

My mom was diagnosed with stage 3A Esophogeal Cancer in June.  The saddest part is that they took a scan in February when she was having problems swallowing and they overlooked the cancer on the scan and sent her home when she was stage 1.  She was stage 3A when formally diagnosed.

She had a PEG tube put into her stomach (I will talk more about this in a minute) and the port for chemo.  She received 28 days of radiation and 6 sessions of chemo, once a week for six weeks.  We concluded that treatment about 4 weeks ago.  She is back up to 98 pounds at this point which is a win for us.  She had the hiccups for 9 days and 9 nights toward the end of her treatment that led to her losing 18 pounds.  It turned out this was because they switched her to morphine and that is the allergic reaction in some people.

We met with the surgeon to get the next steps and then I flew her to California to meet with surgerons at UCLA to discuss what their treatment plan would be.  In all honesty, we were in such a rush to start due to the missed diagnoses that we jumped into the treatment before looking at second opinions so that is what we are doing now.

The original surgeon said he wanted to take part of the esophogus and part of the stomach and he thought that was best.  He is comfortable in using an open surgical procedure which would lead to at least 2 weeks in the hospital post surgery and then recovery at home.

When we saw the new surgeon at UCLA this week, he recommeded a full esophogectomy which would be done laproscopic leading to 7-10 days in hospital recovering and reduced size of incision site(s).  He recommended this as he said this would make it far more likely that the cancer would not recur since the organ that showed it could grow cancer would be gone.  He also said the side effects from this surgery would be about the same as the other.

Has anyone else had to make this choice?  My mom is lost and looking to me for answers and I am struggling.  I really don't want the cancer to come back if she makes it through, but she is scared with the thought of losing all of her esophogus.  The surgeon also scared her by saying it could make her voice change due to the nerve close to the surgical sight.

I am not sure how to council my mom and have been trying to just get her as much information as I can on both procedured but I know she would prefer to hear from anyone that has gone through this before.

Any information would be greatly apprechiated.  We have to make a decision in the next couple of days as both surgeons want to have the procedure very soon and we have to get PET scans next week as well as other surgical preparedness tests.

Has anyone else been faced with this?  what did you decide to do?  What swayed you one way or the other!

 

Thanks!!

 

Randy

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
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    I am not sure how much is removed is all that important

    Randy,

    I am sorry you and your mother find yourself here looking for advice. I know this must be a very difficult time for you both. I had an esophagectomy in 2009. I did not have the ability to make a choice, the surgeon I had was adamant about a traditional Ivor Lewis surgery as a solution for my particular case. She believed the “open” surgical approach gave her more options in terms of looking at the area around the tumor and removing as many lymph nodes that may have been involved as possible.

    In the five years I have been reading and posting on this forum I have seen the benefits of “open” surgery vs. “minimally invasive” laparoscopic surgery debated many times. Both have benefits and drawbacks; depending on the surgeon to whom you are talking, and the patient involved. My personal feeling is that it is more important that you be comfortable with the background and capabilities of the surgeon and the recovery facility than the surgical technique. I would be asking questions about how many esophagectomies the surgeon did each year, and what were the statistics for outcomes for the surgeon and the aftercare treatment facility, in terms of complications and mortality. Either surgical approach is complicated. Irrespective of the size of the surgical incisions, what is done on the “inside” in an esophagectomy with gastric pull up is the same.

    A portion of the esophagus is removed, a portion of the stomach is removed, and the stomach is resected into a tubular replacement for the esophagus and relocated to the chest area. Those of us who have had the surgery refer to this new arrangement as a “stomaphagus”. In addition, the vagus nerve that controls a number of autonomic functions like acid production and peristalsis is severed.

    I am not sure it makes a lot of difference how much of the esophagus or stomach remains after surgery. The fact remains that the lower esophageal sphincter is at the bottom of the esophagus is removed, the stomach is resected into a tube, and the pylorus is often modified to slow the movement of food into the small intestine.

    In my particular case; roughly ¾ of my esophagus was removed, and about ¼ of my stomach was removed. Frankly I did not care how much of those components were removed; I wanted to hear the words “clear margins”. Those are the words the surgeon uses that define the margin of normal tissue around the cancerous tissue that was removed. As far as I was concerned I wanted the surgeon to remove as much as was necessary to insure the margins were "clear".  I think sometimes they don’t know how much that is until they get to the point in surgery where they can see the area. And they are not really sure until the pathology on the removed tissue comes back four or five days after surgery.

    So I would counsel your mom not to be concerned about how much is removed. After the surgery is completed it is basically a “gravity feed” system anyway. I would be more focused on the physical “trauma” of surgery and what approach would create the shortest recovery time and least potential for complications; and that comes down to the skill of the surgeon, and the competency of the aftercare center.

    I know this is a difficult decision. I am certainly not a medical professional and my suggestions are based only on my personal experience and what I have observed here over the last five years.

    My suggestions would be:

    1. Find a surgeon you trust. Ask frank questions about number of esophagectomies per year and outcome statistics.
    2. Investigate the aftercare facility your mother will be in after her surgery. Pay particular attention to number of post-surgical infections.
    3. If your surgeon does not recommend minimally invasive laparoscopic surgery, ask why. “I don’t do that” is not a valid answer.

     

     

     

    Most of us who have had esophagectomies have some required life style modifications and aftereffects from surgery, but I am not sure that the amount of esophagus or the amount of stomach that was left has much to do with either.

    Wishing you and your Mom the best as you move forward with 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

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
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    Minimally Invasive Esophagectomy has many advantages

    Dear Randy,

    So much to say—so little space to try to condense it.  Needless to say, our heart aches for you and your mom even though we’ve never met.  Once you are diagnosed with Esophageal Cancer, you become a member of an “elite rare group”—a minority of the US populace for sure.  But there is hope for your Mom.

    Randy, first let me agree with Paul61 and say that the decision as to how much of the Esophagus and Stomach to be removed depends upon the extent of the infiltration of the cancer.  Now you didn’t state why the first surgeon said he would be pleased to perform the “open” surgery and suggested removing part of the stomach and the Esophagus.  Most of the cases of Esophageal cancer are “Adenocarcinoma at the GastroEsophageal  (GE) junction”.  This was the case with my husband William.  So if no part of the stomach was infiltrated with the cancer, one wonders why the first surgeon would want to “take part of it”.  You see, the stomach is divided into 2 parts and made into a new “gastric tube” to replace the diseased Esophagus.  In my husband’s case he had his entire Esophagus removed, but no part of his stomach was “taken” because it contained no cancer.

                I would differ slightly with the UCLA surgeon’s remarks about the “side effects” would be about the same.  Perhaps he should have clarified those remarks a bit more.  The side effects from the surgery itself are remarkably different.  With the MIE there are no massive incisions to heal, thereby causing less possibility of infection.  I read of one lady’s story recently, and she said that one side of her back was “numb” still and it had been several years since her “open” surgery. 

                Now “recovery” is quicker as well because there is quite a difference between a massive incision and a one-inch Band-Aid cut.  However, there are certain after effects from this surgery which all will have to work their way through.  This will differ from patient to patient, and I won’t even begin to enumerate them here.  That will be for a later date.  Right now you are endeavoring to find the best surgeon for your mother.  However, all our EC friends know the “new normal” they are living with, and are happy to be alive I might add.

    However, initially at the time of my husband’s MIE surgery on May 17, 2003, there was one small incision (estimated no larger than 2 or 2 ½ inches) where the diseased Esophagus was removed.  There was a potential danger of damage to sensitive nerves, however, my husband experienced no damage or voice change.   Therefore, I would want to see your mother have her surgery where the least possible complications present themselves.  So it seems that this UCLA surgeon is familiar with the MIE procedure, but perhaps was trained to perform the surgery where the removal of the Esophagus was removed at a “neck incision” as was the practice originally.  There is a Thoracic surgeon at UC-Irvine by the name of Dr. Ninh Nguyen.  He practiced with Dr. Luketich in the mid 90s when the MIE was in its infancy.  He is extremely gifted.  He makes the incision in the chest rather than in the neck.  Incidentally, one way to tell a good surgeon is by the number of medical documents he has authored that have been accepted by the medical society.  Both Dr. Luketich and Dr. Nguyen have written “hundreds” of articles relative to their findings.  They are truly “gifted” thoracic surgeons.

    Hopefully this information will be of help in letting you make an “informed decision.”  Our prayers will certainly be with you and your mom during this trying time.  We all understand.

    Loretta Marshall

    (Wife of William, T3N1M0 , Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY

    by Dr. James D. Luketich, University of Pittsburgh Medical Center - May 2003

    Husband now into 14th year of remission with no difficulties.)

    --------------------------------------------------------------------------

     

     (My Note:  This web link below originates from a site that anyone can join called PRACTICEUPDATE.  The link posted will take you to the HOME page, and in order to see this archived article, one would need to be a member.  Since most will probably not have this on their list of “favorites”, I will print it in its entirety here.  This article is now 4 years old, and lauds the latest modifications Dr. James D. Luketich has made to his Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY.  He no longer makes the small incision in the neck to remove the diseased Esophagus.  NOW he makes a small incision further down in the chest area thus lessening chances of damage to the Pharyngeal or Laryngeal nerves.  One can see the marked contrast outlined below. 

    In this report Dr. Luketich is discussing a study of 980 patients who either had the McKeown MIE-Neck Approach …or the modified Ivor-Lewis minimally invasive esophagectomy chest (MIE-chest) approach   The enlarged fonts, italics, and underlines are mine to try to illustrate the contrast between the two types of Minimally Invasive Laparoscopic Esophagectomies. 

    Dr. Luketich back in 2003 was using the MIE-Neck approach.  However, by the time of this *report in 2011 involving 980 EC patients, he is contrasting the older MIE-Neck approach with the MIE-Chest approach.  As one can readily see, the differences draw a stark contrast.  The MIE-Chest approach is now Dr. Luketich’s surgical approach.  Of course, he knows how to perform an “open Ivor Lewis Esophagectomy” if conditions warrant it, but at UPMC the “open Ivor Lewis (TransThoracic) TTE” surgery has become a rarity by comparison.) End of my note.

     

    *1. http://oncologystat.com/news/Minimally_Invasive_Esophagectomy_Leads_to_Low_Mortality_US.html

    Published in Oncology

    News · May 04, 2011

    Minimally Invasive Esophagectomy Leads to Low Mortality - Frontline Medical News

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    BOCA RATON, FLA. (EGMN) — Minimally invasive esophagectomy has advanced to the point where it offers significant advantages over open esophagectomy in terms of operative morbidity and mortality, judging by results of a single-center review of 980 cases.

    Published series indicate that the operative mortality of open esophagectomy is 8%-21%, although a very few high-volume medical centers have reported rates as low as 3%.

    "There is a perception among patients and physicians that open esophagectomy is to be avoided at all costs because of it substantial morbidity," Dr. James D. Luketich said at the annual meeting of the American Surgical Association.

    In his review of 980 consecutive, elective, nonurgent, minimally invasive esophagectomies, the 30-day mortality was just 1.8%. Median operative time was 6.7 hours, which dropped to 4 hours in cases that were not done by residents. The median ICU stay was 2.0 days, with a median hospital length of stay of 8 days. A median 21 lymph nodes were dissected, and 98% of cases had negative surgical margins.

    "A less invasive surgical approach for esophageal cancer would improve the standard of care by reducing morbidity and shortening hospital stays and time to return to daily activities.

     If successful, surgeons might see more early-stage referrals from Barrett's patients now in surveillance," added Dr. Luketich, professor of surgery and chief of the Heart, Lung and Esophageal Surgery Institute at the University of Pittsburgh Medical Center.

    A modified Ivor-Lewis approach involving laparoscopic conduit preparation, videothoracoscopic esophageal mobilization, and intrathoracic anastomosis is preferable to the McKeown approach when the minimally invasive route is chosen. It entails fewer conduit complications and lower mortality, according to Dr. Luketich.

    In this series, 49% of patients underwent a modified McKeown approach involving videothoracoscopic esophageal mobilization, laparoscopic conduit preparation, and neck anastomosis, whereas 51% were treated via the modified Ivor-Lewis approach.

    This was a nonrandomized study, but patients in the two study arms were essentially the same in terms of baseline characteristics. In all, 95% were operated on for malignant disease, 80% were men, and 31% received preoperative chemotherapy and/or radiotherapy.

     Patients who were operated on in the most recent years of the series underwent the Ivor-Lewis approach because Dr. Luketich has come to prefer it. He noted that most trainees are more comfortable with it; they have far more experience with operating in the chest than the neck.

    Furthermore, outcomes are better than results with the McKeown approach. Indeed, the 30-day mortality rate was just 1.2% with the Ivor-Lewis minimally invasive esophagectomy chest (MIE-chest) approach vs. 2.5% with the McKeown MIE-neck approach.

     The major morbidity rate was 31% in the MIE-chest group, significantly less than the 36% with the MIE-neck group.

    This difference was driven by the increased risk of laryngeal nerve injury with the McKeown approach.

    The incidence of vocal cord paresis or paralysis was 8% in the MIE-neck patients, compared with 1% in the MIE-chest group.

    Rates of other complications were closely similar in the two groups: 6% for empyema, 5% for acute respiratory distress syndrome, 5% for pulmonary embolism, 2% for acute MI, 3% for heart failure, and 5% for anastomotic leak requiring surgery.

    Quality of life assessments using the Short Form-36 indicate that by 90 days, post-MIE patients scored in the age-adjusted normal range.

    "I think by 90 days the patients have bounced back," he concluded. "Laparoscopy-VATS [video-assisted thoracic surgery]-chest anastomosis is now our preferred approach to most esophageal cancers."

    Discussant Dr. David J. Sugarbaker called Dr. Luketich's study "a landmark paper."

    "Dr. Luketich has been a pioneer in esophageal resection, and I think has developed a procedure that is rapidly becoming a standard of care worldwide.

    This is the largest experience reported to date," noted Dr. Sugarbaker, professor of surgical oncology and chief of the division of thoracic surgery at Brigham and Women's Hospital and Harvard Medical School, Boston.

    "He's set the standard, both in quantity and quality, for this operation," agreed Dr. John G. Hunter, professor and chairman of the department of surgery at Oregon Health and Science University, Portland.

    Dr. Luketich declared having no financial conflicts of interest.”

     

    This is Dr. Ninh Nguyen in an actual Minimally Invasive Esophagectomy surgery.  He operates out of UCIrvine in California.  These are excerpts from the MIE surgery.  It lasts approximately 46 minutes.  I realize it may be more than you can comprehend at this point, but it is a great video to educate one on the totally laparoscopic MIE. 

     

    This is Dr. Nguyen giving a quick synopsis of how he performs the MIE. He now uses the MIE-Chest incision which is the latest improvement for an Ivor Lewis Minimally Invasive Esophagectomy.  In this video at point 7.49 or so, he will show the placement in the right chest where the MIE-Chest incision will be made.  You might want to ask your UCLA surgeon if he uses the MIE-Neck or the MIE-Chest incision.  As you have read, in the link #12, the MIE-Chest is far superior to the older method of making the incision in the neck.

    3.  https://www.youtube.com/watch?v=u3o30epRTiM

     

     

     

     

     

  • JKGulliver
    JKGulliver Member Posts: 93
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    Tough Decision

    Randy,

         By now you have probably made your decision.  I see there are postings giving you very good advice.  I would like you to know that it matters whether or not your surgeon does this surgery often.  You need a specialist.  In addition, the non-invasive form of this operation has many advantages.  My husband lost all his esophagus and 2/3 of his stomach.  The stomach is pulled up and attached near just below the vocal chords.  His voice did change.  He was stage 2.  He is now 2 years, 5 months without signs of cancer.

         The immediate recovery from surgery is faster with the non-invasive surgery.  There is a period of adjustment learning to eat and drink again.  It took my husband over a year to adjust.  Please continue to let us know how our mother is going.  This is a wonderful community filled with caring people who have gone through this themselves.

  • Tressa L.
    Tressa L. Member Posts: 4
    edited August 2018 #5
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    Help please

    Hi All. I am wondering if anyone has had Cancer in the upper (cerival portion) of the esophagus?

     

    My mom was recently diagnosed with Cervical Esophageal Cancer. She is T2 or T3, N0 or N1, M0. They are not sure about the lymph because they cannot biopsy it due to location. did not light up like normal cancer would on PET. There were no other METS. Her tumor is 3.8 CM.

    The Dr. is saying that surgery is not an option due to where the tumor is.

    They are going to do 7 weeks of radiation 1 hour per day Mon-Fri (35 total) and 1 chemo (Charbo/Taxol) each of those 7 weeks. Then she will have a break for 4-5 weeks and then they want to do more chemo only a stronger dose.

    She has had and beaten cancer twice befor... She had Hodgkins Lymphoma when she was 19 years young. had remission for 27 years until she got Breast Cancer at 27. She had remission from that for 15 years and now she is dealing with this. 

    Please help with any advice and I would really like to hear from anyone who had had EC in this portion of the esophagus.

     

    Thank you in Advance for any help you can give me. I feel so darn helpless!

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited August 2018 #6
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    Wow, That's a Lot

    Hello Tressa,

    That sure is a lot your mother has been hit with.  She must have some sort of superhuman strength.  I'm sorry that I know very little about EC in the upper esophagus.  I had adenocarcinoma which is usually at the gastric junction or thereabouts.  Squamous cell is what usually shows up higher in the esophagus.  One thing that I do know is that they are two seperate animals and need to be treated as such.  The plan they have your mom on is similar to the plan I was on my 1st time with EC (when I was stage III).  I did chemo/radiation (also Carbo/Taxol) and the initial chemo was a reduced "activating" dose to make the radiation more successful.  Unlike your mom, I then had surgery.  Then I had another course of chemo that was the same, but full strength.  The chemo/radiation side effects were primarily from radiation (fried my esophagus shut).  The second round of chemo was worse.  I lost ALL of my hair (leg, chest & goatee are probably less of an issue for your mom).  I was also frequently nauseous.  I was weaker the second time b/c I was recovering from a pretty significant surgery, though.  Hopefully your mom is stronger for her 2nd course of chemo than I was.  

    The one thing you can seem to count on with your mother is that she's some sort of freakish superwoman.  She's 2-0 against cancer and I'd put my money on her this time around, too.

    Best Wishes,

    Ed

  • Tressa L.
    Tressa L. Member Posts: 4
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    Wow, That's a Lot

    Hello Tressa,

    That sure is a lot your mother has been hit with.  She must have some sort of superhuman strength.  I'm sorry that I know very little about EC in the upper esophagus.  I had adenocarcinoma which is usually at the gastric junction or thereabouts.  Squamous cell is what usually shows up higher in the esophagus.  One thing that I do know is that they are two seperate animals and need to be treated as such.  The plan they have your mom on is similar to the plan I was on my 1st time with EC (when I was stage III).  I did chemo/radiation (also Carbo/Taxol) and the initial chemo was a reduced "activating" dose to make the radiation more successful.  Unlike your mom, I then had surgery.  Then I had another course of chemo that was the same, but full strength.  The chemo/radiation side effects were primarily from radiation (fried my esophagus shut).  The second round of chemo was worse.  I lost ALL of my hair (leg, chest & goatee are probably less of an issue for your mom).  I was also frequently nauseous.  I was weaker the second time b/c I was recovering from a pretty significant surgery, though.  Hopefully your mom is stronger for her 2nd course of chemo than I was.  

    The one thing you can seem to count on with your mother is that she's some sort of freakish superwoman.  She's 2-0 against cancer and I'd put my money on her this time around, too.

    Best Wishes,

    Ed

    Thanks Ed!

    Thank you for your encouraging words, and also for sharing a bit with me. I finally figured out how to creat a new forum discussion, so I will copy and paste ,y original post from here in hopes of finding someone with cancer around the same spot as my mom... Have a great day. :)