Akquest123~A 16-yr. EC survivor shares his story of success w/the Ivor Lewis Minimally Invasive Esop

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1

Dear Akquest –

[Am choosing to answer your letter which you posted yesterday, Sept. 6, 2018, regarding esophageal cancer and tentative surgery for your Dad.  https://csn.cancer.org/node/317851

Since I think this is information that others can benefit by as well, I am choosing to place it on a separate topic forum here on the EC link.]

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So glad you wrote and here are my thoughts based on my husband’s successful Ivor Lewis MINIMALLY INVASIVE SURGERY @ the University of Pittsburgh Medical Center way back in May of 2003.  My husband would love to talk with your dad, and we are sending you our phone number by private message.   My husband attends a monthly support Esophageal cancer meeting here in Tidewater, Va. and shares his story of success.  It’s always good to talk to long-term survivors.  He just went for his semi-annual checkup with his oncologist of 16 years!  The report was excellent and no evidence of disease.  (NED) So quite naturally, we cannot stress enough the wisdom of having the esophagectomy ASAP.

It is a great risk to not have the surgery after the successful neoadjuvant treatments of chemo and radiation.  Clinical records show that the tri-modal treatment is the most effective to be sure that the cancer is treated properly.  Sixteen years ago now we learned that my husband had Esophageal Cancer, (Adenocarcinoma @ the Gastroesophageal junction).  Who would have suspected that one small hiccup each time he started to eat would actually signal Esophageal Cancer?  But there we were—frightened, disheartened, shocked, devastated, not knowing what to do or whom to turn to. 

Our internist of 30 years prior sent us to see the best Thoracic Surgeon here in town.  The surgeon told us that we should first have the pre-op (neoadjuvant) treatments and then the surgery.  We were so dumb about it all, at first we thought, “Oh no—no chemo—that stuff will  kill you!”  “We’ll just have the surgery.”  Little did we know!  That is why now that we have come full circle, and know what is what, we cannot remain silent about the value of complete treatment.  And lately, I see some “newbies” saying they are going to take their chances and not have the surgery.  They say their life would be debilitating!  Don’t you believe it!  More likely, it will be debilitating, and quickly in my opinion, if they refuse to have the surgery.  And I won’t mince words, it disturbs me greatly to read that some are going to gamble with their future and forego the optimal treatment—that being an Esophagectomy.

So I will tell you that my husband had the latest laparoscopic procedure known as the “Ivor Lewis Minimally Invasive Esophagectomy.”  His thoracic surgeon was Dr. James D. Luketich who is with the University of Pittsburgh Medical Center.  He pioneered the totally laparoscopic procedure in the mid-90s and has performed thousands since then.  It is the least invasive with the shortest hospital stay and quickest recovery time.  You will search long and hard to find someone, if there is one, who was properly diagnosed with EC, but only had the chemo and radiation and chose not to have surgery, and is alive to tell about it.  If they exist, they are not posting here.  Better to talk with veterans who have “been there—done that”  when it comes to how best to handle a diagnosis of Esophageal Cancer.

As for returning to normal activities, all surgical patients will go through a new acclimation period.  Obviously your body will have to make some readjustments with some “parts missing.”  God put both the stomach and the Esophagus in there for a reason.  Just like “Things Go Better With Coke”, things go better with both organs, but guess what—you can adjust and go back to doing all the things you once did even with a missing Esophagus.

My husband was in and out of the hospital in 5 days and downtown shopping with me on Day 8.  We traveled throughout 3 states during the first 3 months and he did all the driving.  We stopped off in the mountains of Virginia on our way home.  While there, my husband did some cleanup work around my mom’s trailer, and mowed the grass which was on a hillside.  He was 65 when diagnosed in November of 2002, and had the MIE on May 17, 2003.  He is now 81 and has no lingering disabilities from having had the surgery.  I admit not everyone has the same wonderful success story, but who is to say that Dad won’t have the same story to tell?

In the beginning, he had to make the same adjustments all new surgical patients go through, but the return to normal is quicker with the MIE.  And if you are not scheduled to have that kind of surgery, my suggestion would be to have a SECOND OPINION and find a great thoracic surgeon at a hospital where (MIE) Esophagectomies are one of their specialties.  This will be the smart thing to do.  Now of course, none of us can predict what will happen once we enter the operating room.  Yes, it’s a scary time because everything is so new and so uncertain.  That’s why it’s good to talk with others who can walk alongside you.  And believe me, if you lived near us, we would be right there with you.  But the next best thing would be to encourage you to “go all the way” and encourage Dad to finish what he has started. 

We soon resumed our normal activities post surgery.  We don’t have a private plane.  I don’t care for camping, I’d prefer to check in at a hotel and let someone else do the cleaning.  I clean and cook all the time at home.  Of course, when we were younger, all day trips to the beach that included lots of swimming required some energy.  We raised 4 grandchildren, all from the same family.  Our youngest was 7 when my husband was diagnosed.  We went through all the things young people do—“T-ball—Little league-girls’ softball & basketball—boy’s baseball—football—soccer—a 3-week stay at the beach and I did all the cooking.  My husband stayed in the water the whole time the kids did.  He’s a good swimmer.  My husband coached Little League.    We have lived a very normal lifestyle.  We are happy and blessed! 

Even now our youngest grandson just came in and asked Granddad to help him with the lawnmower.  Yes life is great—don’t pass up the chance to return to a little modified new “normal”. 

My husband still does as many home repairs including electrical, and plumbing and auto repairs as he knows how to do.  We also once owned rental property and when we did, we maintained the homes including painting and roofing, etc.  So don’t let anyone tell you that if you have the surgery, you will be debilitated for life please! 

We don’t believe in paying someone else to do what we can do for ourselves.  So my husband’s lifestyle has been very active, but by 81, you begin to “slow down and don’t get as much accomplished as one use to do.”  Of course, my “honey-do” list never seems to shrink though.

We literally just returned home yesterday from our local oncologist’s office for another 6-month checkup and the report says “NED” – No evidence of Disease!  Who could be more blessed?  What better could you ask for?  Please consider my husband’s story and think positive.  We did not put off the surgery for a long period of time.  The surgeon said that radiation can leave scar tissue, and the longer one waits, the more scar tissue buildup can occur.   And we were told from the very start, “You SHOULD have the surgery, even though the scans after the neoadjuvant (pre-op) may show “all clear—no signs of cancer in the esophagus or the lymph nodes!”  And man, are we glad we did.

We wish for you the same success.  It is totally possible for Dad to return to his normal activities.  We are so glad you wrote us here, and we hope to be able to talk to Dad in person.  What can I say?  Don’t pass up the chance to return to a normal lifestyle!  Sleeping elevated and eating several small meals instead of 2 large plates full at a time is no big sacrifice when you’re cancer-free!

So happy to talk to you.

Loretta & William Marshall

P.S.  Here are just a few references that are for your information.  If one doctor is recommending waiting, that would prompt me to have a SECOND opinion.

1.       http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

By Melissa Turtinen - April 4, 2017 12:17 pm

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

       Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

       In 21 percent of cases, the diagnosis was changed completely.

       In 66 percent of patients, their diagnosis was refined or redefined…”

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1.      https://www.cancer.gov/publications/dictionaries/cancer-terms/def/esophageal-cancer

This is an excellent resource for learning to pronounce and understand the medical terms surrounding any particular medical problem.  Key in any word you wish to know more about—click on the audio symbol—and you will hear the correct pronunciation.  This goes for medicines as well.

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2.           https://www.youtube.com/watch?v=FvgEaDVCKfA

Basic informational 4-minute video explaining Esophageal Cancer

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3.      https://www.dailymotion.com/video/x35vcjv

Short intro re Esophageal Cancer with Dr. Luketich

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4.      https://www.youtube.com/watch?v=7S3owHnfcCs

Question & answer session from young interns regarding the Ivor Lewis Minimally Invasive Esophagectomy

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5.      https://www.youtube.com/watch?feature=player_detailpage&v=00p9btmbMvA

[A 1.51 min. video explaining benefits of the Minimally Invasive Esophagectomy]

“Mayo Clinic - Published on Jul 23, 2010 -

Mayo Clinic offers a number of treatment options for esophageal cancer, ranging from outpatient endoscopic therapies for early-stage cancers to esophagectomy — surgery to remove the esophagus. Mayo Clinic is one of the world's largest and most advanced medical centers for esophageal surgery, with highly experienced cancer treatment teams. For some patients, minimally invasive esophagectomy is an option. C.Daniel Smith, M.D., chair of the division of surgery at Mayo Clinic in Florida, offers information about minimally invasive surgical options for esophageal cancer, and who might be a candidate for the procedure.”

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 6.      https://www.youtube.com/watch?v=QxiDzHkwyLA

Minimally Invasive Esophagectomy - Dr. Dawn Jaroszewski describing the benefits of the Ivor Lewis Minimally Invasive Esophagectomy in this 24 minute discussion about how she performs the MIE. 

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7.      https://www.youtube.com/watch?v=cjB3w7ovgNE

Dr. Luketich- HOW I PERFORM THE MIE

He is explaining how he performs the laparoscopic procedure to a group of surgeons during a seminar in Florida in 2013.  This is a 16.44 min. video.

When you hear him speaking, the “anastomosis” is where the two organs are rejoined after removing the diseased esophagus.  The new name for the stomach when it has been pulled up to replace the diseased esophagus, it is called a “gastric conduit.” ________________________________________________ 

8.      https://www.upmcphysicianresources.com/cme-courses/minimally-invasive-esophagectomy

Minimally Invasive Esophagectomy

Publish Date: May 2, 2013 Last Modified: December 22, 2017 Expires: May 2, 2014

A 44 min. video where Dr. Luketich explains the laparoscopic procedure called the Ivor Lewis Minimally Invasive Esophagectomy. 

This is broken down into 32 slides.  Each one has different explanations as the video moves along.

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