Difficulty swallowing again

Mtngirl7533

Hi there! As some of you know my husband was diagnosed with Adenocarcinoma of the Esophagus! T3N1MO. He completed chem and radiation and just met with the surgeon last week! The surgeon has done MIE surgeries but says that my husband isn’t a candidate for this! We meet with him again Feb 14th to go more in depth regarding the exact surgery! The surgeon mentioned that they want to take a good look around while they are in there! He also said the tumor is too large to get through small incisions! When my husband had the EUS, they couldn’t even get the scope past it! My husband started taken in solids over the past few weeks but recently said he is starting to have trouble swallowing again! I wonder if it’s inflammation from the rads or is the tumor beginning to grow again?  He had his last rads/ chemo around the 1st of January! The doc did say it shrunk some with the treatment but still too large to remove from a small incision! I am a little skeptical about docs decision but my husband is totally ok with it! I know most of the fine folks I’ve talked with on this site encourage MIE, which I was hopeful would be done! I do know there is lymph node involvement and the tumor is large! We were told after EUS that it has infiltrated all layers! Is it possible for tumor to be growing again or is it just inflammation? Any input would be wonderful! Thank you! 

paul61

It could be inflammation

Hello Mtngirl,

I have to admit I have no personal experience with this, as I had chemotherapy and surgery but did not have radiation. But having been participating in this forum for a number of years, I can say that many folks report painful and difficult swallowing for three to four weeks after completion of radiation therapy. In fact, some folks say they could not eat at all for a few days after their last radiation treatment. But that difficulty was from pain from the irritation caused by the radiation. So, if your husband’s “difficulty swallowing” is pain related it could be irritation. If on the other hand, it is because things are getting stuck going down, I am not sure if that is radiation related.

While a minimally invasive esophagectomy is preferable in terms of overall time and ease of recovery, there are several reasons why it may not be the best solution for your husband. I had the “open” traditional Ivor Lewis approach and it came out OK for me. My recovery was longer and probably more difficult than folks who were lucky enough to have MIE surgery, but the end game is to get the tumor, clear margins around the tumor, and enough lymph nodes in the vicinity of the tumor to pick up any “straggler” cells that may have escaped into the limbic system. And whatever method gets that done best is the one you want.

If his last radiation treatment was around the 1^st of January his throat should start feeling better soon. Then the plan is to eat as much as possible to put on weight prior to surgery.

I hope he will be feeling better soon.

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

 

Life may not be the party we hoped for, but while we are here we might as well dance!

Mtngirl7533

Yes, we are being told by the surgeon that the tumor is still too large to remove through small incisions! And of course, they mentioned removing lymph nodes to be checked as well! I am certainly glad you’re doing ok! Today my husband said that it doesnt seem to hurt as much when he swallows now! It did for about 3-4 days! So maybe it was the irritation from the rads! We meet with the surgeon Feb 14th and it cant be soon enough! Thank you so much for responding! 

LorettaMarshall

Mtngrl~MIE makes 1 cut approx 2" to 2-1/2" to remove tumor

Hey there Mtn. Girl –

For other’s benefit, even though I sent you a private note—there is one small incision through which the entire diseased esophagus is removed.  Dr. Luketich made one small incision on the left hand side of the neck that was about 2 to 2 ½ inches long.  There was also a small drainage tube attached to a small suction cup.  It was my job to empty the cup each day and keep a record of its contents.  Then when the fluid was next to nothing and running absolutely clear the tube was removed.  It probably took about 2 weeks for this small incision to heal completely from the inside out. 

Whoever heard of a surgeon not being able to remove the esophagus in the process of an Ivor Lewis Minimally Esophagectomy?  I n my opinion, his reasoning tells me he is “inexperienced” and your husband should “fall out of love with this surgeon” and go to a hospital who specializes in the MIE.  It doesn’t have to be UPMC, but it should be a surgeon that does at least 25 a year, has a good reputation for few if any links, low patient mortality rate, and short hospitalization and quick recovery time—all attributes of an MIE by a specialist who knows his/her stuff.  Of course, there can be unforeseen complications—we all know that, but there will be fewer when the patient is at a hospital where difficult cases are handled all the time, and the medical team is more experienced at handling difficulties. 

So let’s hope your husband will listen to reason, quit liking his doctor more than loving his life, and mark off the requirement that it be “close to home”—all the wrong reasons for keeping the current doctor.  After all, it’s your life too, and if he suffers, you suffer.  If he wants to climb those power poles more quickly, he should go the distance and get the very best surgeon.  This is not the surgeon that I would recommend, even though I don’t know his name. 

And don’t give me the excuse that one can get a “better look” inside with the open.  Well, in my view, that’s baloney!  If that were the case, the “open” would still be the surgery of choice!  Think about it.  Why lie there with your belly wide open, and several gloved hands probing around the organs when one can see everything clearly on monitors with high-powered cameras?  I’ve watched “ALL” the surgeries on video and if your husband would take a look at them, he would be convinced that the “open” is not as good as the MIE. 

Incidentally, as I said before, Dr. Luketich has since begun making the small incision to remove the Esophagus on the right side of the chest lower down more in line with the waist area.  (The rest of the cuts are band-aid size -- just big enough to insert the "tools" through which all the work is done while the high-powered cameras project the "inside" on several monitors around the wall.)  This has reduced dramatically the chances of damage to the pharyngeal (throat) and laryngeal (voice) nerves that are so closely aligned with the Esophagus.  Those organs are “first cousins” to the Esophagus.  With the incision in the neck, some have had a voice change or lost their voice, believe it or not.  My husband did not have any voice change, but I wholly concur that the one small chest incision is a big improvement.  

So I sympathize with you—your husband isn’t doing the research.  Even though he is the patient, you are his advocate, coordinate and support group all rolled up into one.  Caregivers, usually the wives, carry a heavy load.  After all, if you’re happily married, and you are, you two “became” one till death do you part—in sickness or in health!  Right!  YES!  You’re hurting too.  And because of that I wouldn’t “hold back” in sharing my emotions with him.  We remember that your doctor didn't think a medi-port or a J-tube was necessary, so I'm not surprised that now they think the "open" surgery is "okay" as well!

So just for the sake of others who might be checking this column and I see that there are many, I want them to be fully informed about the advantages of the MIE as opposed to the open.  And incidentally, my husband was EC Stage III, (T3N1M0).  All four walls of his esophagus were infiltrated with the cancer, and there was no difficulty in removing the diseased Esophagus. 

At least 22 lymph nodes will, or should, be removed during the surgery and will be examined by a pathologist, part of the medical team who work together as a group.  A determination will be made by the pathologist for the presence, or absence thereof, of cancer that has spread to the lymph nodes.  If any is found, then post-op (adjuvant) chemo will be required.  Anyone not taking the post-op chemo stands great chance of recurrence soon.    Thank God all was “clear” for my husband when surgery was performed way back in 2003.  I want your story to be as good as it can be, and an experienced thoracic surgeon at a specialty hospital will make that more of a possibility.

Hang in there.  God keeps your tears in a bottle, and catches every one that falls.  (Ps. 56:8) I’m praying that your husband will come to his senses, and let the “cooler head” prevail.  There’s time before February 14^th to find an “experienced STONE CUTTER!” 

Prayerfully,

Loretta (William’s wife)

P.S.  Incidentally:  Most people will be getting replies from Paul61 or Ed for a time as I am now in my fourth and “final”, I say, series of chemo treatments for Ovarian Cancer Stage IV.  I will answer as I feel like it, but all of us know how low you can go for “physical fitness” when you’re being infused with POISON on a regular basis.  Now while I love the perfume called POISON by Dior, I can put as much or as little as I like on the outside.  That makes me happy, but the poison on the inside is hopefully doing its job and will hopefully give me a longer “PFS” progression free survival time, but as we all know, with a Stage IV it’s only for a time, and it’s my choice to know when “enough is enough”.  My doctor said he thinks I am becoming immune to the Carbo/Paclitaxel (Taxol) combo and suggested that I take DOXIL instead.  I said, “NO”, that’s a downgrade and I’m not going there.  As I’ve said before, I choose to believe what the Psalmist David said in Psalm 139, and I believe that I will not live one day longer, or die one day sooner than my allotted time on Planet Earth, and I will spend the next life in Heaven.  Now that’s not to say there won’t be a lot of grief during this process, but one day it will all be over and my loved ones can catch up with me on the other side, which is far better!  This certainty for me keeps me from living in a constant state of depression and worry. 

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Here are some references I wrote to a fella named Tronnier yesterday.  He definitely needs a
“new stone cutter” as well.  I’ve never read such of any worse experience than he is having and he definitely needs to go elsewhere to a specialty hospital, but then again the choice is up to him.

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…”

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2.       https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

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 3.      http://www.vitals.com/doctors/

Put your surgeon’s name in here and see his credentials

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 4.       https://www.healthgrades.com/physician/

“Now you can choose a doctor based on knowledge. Not chance.  To get the right care, you need the right doctor and the right hospital. Now there's a way to find them…”

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

GTSC 2013 James Luketich Esophageal Anastomosis: How I Do It.

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6.  http://www.upmc.com/media/experts/Pages/james-d-luketich.aspx

 “Dr. Luketich’s areas of interest include thoracic and esophageal surgery. These include gastroesophageal reflux disease, management of hiatal hernias, management of giant paraesophageal hernias, and other disorders of the esophagus, including diverticulitis, strictures, and many others. He has particular expertise in the multi-disciplinary management (combined chemotherapy/radiation and surgery) of esophageal and gastroesophageal cancer, Barrett’s esophagus, and lung cancer. He performs numerous complex operations on disorders such as these using minimally invasive techniques, for which he has become world renowned, performing over 1,500 minimally invasive esophagectomies.

Dr. Luketich is the principal investigator or co-investigator on numerous research grants and has published over 250 peer-reviewed manuscripts, 150 invited reviews, textbook chapters, and editorials, and 350 abstracts. He is frequently invited as an honored speaker around the world to present topics that relate to his research and minimally invasive techniques…”

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6.      https://nortonsafe.search.ask.com/search?chn=1000820&ctype=videos&doi=2016-09-30&geo=US&guid=333950C0-F332-49D9-8207-443FE0C2AF63&locale=en_US&o=APN11910&p2=^EQ^ch20us^&page=1&prt=NSBU&q=james+d+luketich+video+2017&tpr=7&ver=22.8.0.50&ots=1516938015085

 Dr. Jobe is an associate of Dr. Luketich’s.  I like his information.  He is the on who posted some years ago that it was found that regular NEXIUM users were actually presenting with Stage IV often because the purple pill was actually masking the symptoms of EC.  There’s no substitute for an endoscopy when one begins to have symptoms that are associated with Esophageal Cancer—usually difficulty swallowing and heartburn—are the villains.  However, my husband only had a “hiccup” each time he started to eat something.  And I don’t always see “hiccups” as a symptom, so that should be something to watch for as well for anyone wondering “why” they have hiccups when they begin to eat.  And my husband’s diagnosis was Stage III when our regular doctor said, “You need an endoscopy!”  The rest is history, but with a good ending thus far. 

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

(My note:  Dr. Luketich addressing Beijing Conference and answering questions in late 2017.  He says when looking for a good surgeon, check out his track records.  Has he written any articles that have been accepted in Peer review journals.   How many surgeries has he performed?  These are questions you should have asked your surgeon, and I doubt you would be having this problem today.  Dr. Luketich has encouraging words about treatment for EC patients in the future.  We love this man since he was my husband’s surgery for the 2003 MIE.  UPMC ranks #6 for Gastrointestinal Surgeries.)

#CITSAC 2017#James D. Luketich

 ASVIDE - Published on Aug 18, 2017 - Meet the Professor in the 2017 Beijing International Academic Conference on Thoracic Surgery and the 5th National Cancer Center Annual Conference…Category - Science & Technology

 

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Mtngirl7533

Dear Loretta!

Wonderful advice as always! Thank you for sharing the links as well! They have been very informative and useful to say the least! I wrote you a private msg so as you know, I have many legitimate questions for this surgeon! I want concrete answers! You have surely helped many people in your time! You have ceratinly been a blessing to me! I was excited when I first found out that this new surgeon did MIE surgeries and then my heart sank when he told us that my husband wasn't a candidate for this procedure! I told Paul61 about the difficulty my husband has had swallowing again. Then he said it wasn't too bad! Well, once again he is having difficulty which makes me wonder if the tumor is growing again? I guess I may never know! The doc tells me they usually do the surgery with 6 weeks after radiation? Anyways, I intend to do more reasearch about surgeons, ect. and talk with my husband again. Yes, ultimately it is his decision but I will do my best to encourage him and tell him, this isn't his only option! I hope we all go to Heaven because that would mean no more pain and suffering but also hope we all, including you have a lot more years before our time is due<3 your Mtngirl

paul61

Swallowing difficulties after radiation therapy are common

Hello Mtngirl,

I also participate in another online esophageal cancer forum called “Smart Patients”. I remember a thread there that discussed post radiation therapy swallowing difficulties in EC patients. From the comments there it is very common to have difficulty swallowing a week or two after radiation therapy ends. Not just from pain on swallowing but also from the lining of the esophagus swelling from inflammation.

Smart Patients is an excellent resource and information exchange forum for esophageal cancer patients. If you have a chance you may want to take a look at their section on EC. You will find it at https://www.smartpatients.com

It is divided into “communities” and you will find a community for esophageal cancer.

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

Life may not be the party we hoped for, but while we are here we might as well dance!

Mtngirl7533

Thank you for sharing!

I so appreciate you sharing this link with me! I am taking my husband into the cancer center tomorrow as he continues to have a fever and generally not feeling well! His appetite has diminished significantly over the past week as well! I am thankful for the J tube! His last radiation treatment was Jan 3rd! I will definitely take a look on the site suggested and thaank you very much:)