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Ivor Lewis procedure

Mtngirl7533's picture
Mtngirl7533
Posts: 85
Joined: Jan 2017

Just popping in to give a little update! My husband just Got discharged after a hospital stay of 14 days from having the Ivor Lewis surgery for stage 3 Adenocarcinoma of the GE Junction! Lymph nodes closest to the tumor came back positive for cancer but the ones further out tested clear! I will celebrate that! As I have been cautioned regarding this surgery, it certainly is a tough one! The anesthesioligist looked at my husband and said, “This is the first surgery in your life and you had to pick a big one”. As expected he is having considerable pain. But he is a trooper and was taking a walk down the hall the 2nd day after surgery! By day 14, he was taking several! This surgery didn’t come without it’s hiccups however and I have never seen him so uncomfortable and so much in pain! As some of you know, I tried to get him to get a second opinion and to go somewhere and find someone who does minimally invasive esopagogastrectomies! He is stubborn, wanted to stay close to home and refused to budge on this matter! The surgeon removed a 1/4 of his stomach and about 3/4 of his esophagus! Lymph nodes were removed as well! The docs had a big meeting and decided not to do more chemo! They are pretty confident that he had received vigorous treatment and then the surgery! The surgeon did tell us he couldn’t say with any certainty that cancer wouldn’t come back but he was hopeful it wouldn’t. He also said my husband would be followed very closely especially the first 5 yrs. If nothing else shows up he will be considered NED, no evidence of disease! Of course, having been on this site and educating myself in general, I already knew this! I put my trust in God that he will see us through no matter what occurs in the future! 2 days ago while hospitalized and after a good barium result, he was placed on a clear liquid diet! Today at discharge, he was placed  on a mechanical soft diet! Of course we will continue to use the j tube for some time until he is able to sustain with food by mouth! He has quite the incisions but ironically the one going around his ribs into the back area bother him the most! They sent him home today with liquid pain meds and lidocaine patches! I was spending upwards of twelve hrs a day at the hospital with him caring for him! Bathing , making his bed, ect. I was glad to do it and needed to stay busy! Then going home at night to do chores and care for our pets and right back again in the AM! So I talked with the surgeon and he agreed it would be ok to drive my husband up north to our mountain home! Of course absolutely no lifting, pulling or pushing anything over the weight of a gallon jug. I assured him I would be doing all the driving and lifting, ect. I am curious as to how long he will be restricted from driving out of curiousity? I am trying to figure out when to go back to work! Of course, I can take all the time I need, thats not the problem, but want to try and figure out when it would safe to leave him? Right now I am thinking of going back April 1st, in 2 more weeks but I am watching to see how he does of course! Maybe those of you who have been through this surgery may know? We see the surgeon again next week after he has an X-ray! I know the road to recovery will be long and I will help him anyway I can! As I have been doing since the diagnosis last October! Everyone has been wonderful on this site and I am So grateful for your kindness, advice, education and positivity! I will try to check back again when I get back From the mountains!  

paul61's picture
paul61
Posts: 1346
Joined: Apr 2010

Hi Mtngirl,

I was very sore when I first came back from the hospital and my first two weeks consisted of walks from my bed to my recliner. Like your husband, the large incision in my back gave me the most discomfort. They spread the ribs apart back there to get to the esophagus and that stays sore for quite a while. I was fine with being left alone for a couple hours or some after a couple of days, but as long as I was taking opioid pain relievers (oxycodone) my wife did not want to leave me alone for long. I did not like the side effects of oxycodone, I slept all the time and felt like my head was wrapped in cotton, so I transitioned to Tylenol as quickly as I could and only took the oxycodone when I went to bed at night.

 

I had difficulty sleeping on my back on an incline, because my back was sore and I had always been a side sleeper. I used an incline pillow with a second pillow under my knees so I did not slide down the incline pillow at night. As I was also on a tube feed at night I did not get a lot of sleep the first few weeks.

Many people here have reported that they slept in a recliner for the first couple of months. Ultimately I purchased an adjustable bed and that was a good investment, much more comfortable than an incline pillow and much more range of adjustment.

My biggest challenge right after surgery was learning what I could eat and what things caused trouble. For the first couple months after surgery, any dairy other than cheese, or anything that had sugar in it would cause a “dumping syndrome” episode. I mainly had soft foods like scrambled eggs, macaroni and cheese, casseroles of various kinds, and smoothies. The smoothies were made with fruit, chia seeds, and protein powder. For example, one I liked was one banana, three large frozen strawberries, one tablespoon of chia seeds, one tablespoon of protein powder, and ice. I need to drink smoothies very slowly over an hour or so, I would put them in the refrigerator and just sip on them occasionally. Most of us who had Ivor Lewis surgery had dumping syndrome over the first few months. It is frustrating but it does get better with time.

Avoid nutritional drinks like Boost and Ensure, etc., they have lots of sugars and cause dumping.

I tried to walk a little bit each day, but I have to admit my first couple of weeks were about a block away from the house and then back. I got short of breath and fatigued very quickly during the first three weeks or so after I came back from the hospital.

I am sure they gave you diet guidelines but just in case:

http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

And the infamous “dumping syndrome:

http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

The other thing people tend to forget to tell esophagectomy patients is that along with dumping syndrome comes feeling dizzy, rapid heart rate, and a very anxious feeling due to a drop in blood sugar caused by the digestive system calling for insulin.

So even though they did not tell me I could not drive, I did not drive for about a month after my surgery because I did not want to go far from the house until things settled down in my digestive system. Of course, I would not recommend driving while taking opioid pain medication, but I only took that for about the first week and then transitioned to Tylenol.

You both will have to be patient, this is MAJOR surgery and typical recovery time is between six months and a year. After I came home from my surgery I forced myself to eat 8 small “meals” a day. I say I “forced myself” because I was never hungry and food did not look attractive to me. I just viewed food as medicine necessary for me to get rid of my feeding tube and gain the weight I lost back. I ate on a schedule because I had no appetite. Now 8 years later I still eat 7 “meals” a day and I am still never hungry. But now I can eat almost anything in small amounts even ice cream and doughnuts, and cookies that were problems right after surgery. I just need to make sure the portion size is small and it helps if I eat something high in protein first.

It does get better, but it does take 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

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

 

Mtngirl7533's picture
Mtngirl7533
Posts: 85
Joined: Jan 2017

I so appreciate your response! It is very helpful and gives me insight into things I haven't thought of! My husband sseems to be improving a little everday! Now he is only napping about once a day! He is taking walks inside the house several times a day and even went inot a store with me recently. Of course he tires easily still. He is also consuming a little more soft foods everday as well! So far, so good! I know he'll be on the j tube for awhile which is a blessing. He gained back some weight after the radiation but lost it again after the surgery. To be expected I know. As I said, he will have an xray Wednesday and then see Surgeon immediately after! I am assuming the are xraying his ribs? Thank you so much for the links as well and am sure they will be very helpful! It is great to know that things will get better with time! It gives us hope:)

Jeasom
Posts: 2
Joined: Sep 2018

 i'm a very active 65 year old construction materials salesman. I'm on the road about 110 nights a year. I underwent Colon resection surgery 15 years ago and have had a wonderful life since. Beating the cancer doesn't worry me, but the IVOR Lewis surgery Sure does ! I'm determined to push thru this and hope to continue to work until I'm 70. If you adhere to the dietary restrictions, were your bodily functions fairly normal ? 

paul61's picture
paul61
Posts: 1346
Joined: Apr 2010

Hello Jeasom,

It does take a few months after surgery for you to learn how to adjust to what you can eat; and more importantly, how much you can eat. But with relatively few lifestyle changes things settle down to a “new normal”. If by “bodily functions” you mean eating, swallowing, digestion, and elimination. The answer is definitely yes.

The “lifestyle” changes I refer to are:

  • You must eat smaller amounts more often, the old three meals a day is replaced by seven small “snacks” a day
  • You must eat slower and chew your food more thoroughly than before, and take time to swallow carefully
  • You should only drink small amounts of liquids with meals and take time to drink larger amounts between meals
  • You should rest in an upright position for about 30 minutes after eating to avoid abdominal discomfort
  • You must sleep at about a 45 degree angle since you no longer will have a lower esophageal sphincter

Other than those small changes everything else is relatively “normal”

Most people find that full recovery from surgery takes from 8 months to a year so patience is required.

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!

South Side Steve's picture
South Side Steve
Posts: 32
Joined: Nov 2011

Hi Jeasom,

Paul did a great job of letting you know what to expect. I had the Ivor Lewis surgery 6-1/2 years ago and I'm doing everything I did before the surgery. I was 61 when I had the surgery. I had a desk job at the time and went back to work about 6 weeks after surgery. The biggest difficulty I had in recovery was a rib that was fractured during surgery. That took a long time to heal. I learned that fractured ribs are fairly common with this this surgery. During my treatments, I was constantly warned that this was a "life-changing" surgery. Other than sleeping on an incline and eating smaller portions, I'm living my life just like I did before surgery.

Good luck with treatments and surgery. It sounds like you've got a great attitude and I think that's a major asset to recovery. There's going to be some rough days ahead, but there's definitely a light at the end of the tunnel.

Steve

Deathorglory's picture
Deathorglory
Posts: 308
Joined: Jul 2013

Hello Mtngirl,

Great that you guys have gotten home and can start moving towards your new normal, whatever that may be for you.  The thing to keep in mind through the recovery process is that it gets a little bit better every day (other than inevitable bumps in the road).  Compare things over time to see this.  Eg. "last week he walked down to the corner and back.  This week he walked around the block."  I'll offer a little of my recovery timeline as an example, although your husband's will certainly differ.  I was supposed to have the surgery done laproscopically, but switched to an open operation halfway through b/c they ran into more scar tissue from a previous surgery than expected.  I also developed pneumonia while in the hospital.  That took about a month and a half to clear up.  My wife worked the whole time with only a few days off when I needed some extra help.  I went back to work full time after two months.  I had a desk job, though, I didn't actually work for a living.  About four months after the surgery, I started a "bonus" course of chemo (Carboplatin/Taxol) that was the same as with radiation, but much stronger.  I worked straight through the six months of chemo (except off Tuesdays for all day chemo).  I was eating solid food right after discharge from the hospital, just not much.  I actually only used the feeding tube for two days.  I'm diabetic and my sugar was out of control in the hospital but quickly got normalized once I was home and using my own insulin and eating my own way.  I didn't drive much for a while.  I just didn't feel up to it or to going anywhere (pneumonia).  I wasn't restricted, I was just told, "you'll know when."  I was on pain medication for a while because coughing (pneumonia) after surgery is insanely painful.  I was taking opiods in large doses for about a month and a half.  Then when the pneumonia subsided, I stopped taking anything at all.

It's great that you guys are going to be able to go to your mountain house.  Hopefully, that will give you some time to just be, without a million and one other things getting in the way.

Best wishes,

Ed

Mtngirl7533's picture
Mtngirl7533
Posts: 85
Joined: Jan 2017

Thank you so much for sharing! Al of these things are helpful for me to pass on to my husband! He is improving slightly every day! He was watched for pneamonia in the hospital and put on an intravenous antibiotic as his lungs didn't sound good the doc said. He sounds well now! Baby steps every day! I am so incredibly thankful for this site and you people who are willing tto help others! It is a scary and long road indeed! But you people give hope to others and hope is what we need:) 

paul61's picture
paul61
Posts: 1346
Joined: Apr 2010

When they do an Ivor Lewis proceadure they typically have to spread the ribs, or sometimes break a rib, in order to gain access to the esophagus from the back. They also typically collapse the right lung for the surgeons to get the room they need to relocate the stomach, and form the anastomosis. So I assume the x ray will be to insure the right lung has fully expanded, that there is no pleural effusion caused by the lung tissue being irritated by collapse and expansion, and to insure the ribs have moved back into place appropriately. I had soreness in my right chest and back for about 10 months after my surgery. It was not terrible, on a scale of 1 to 10 it was about a 3. Even 8 years later when the weather becomes cold and damp that area still stiffens up and becomes sore. But Tylenol solves the problem.

One day at a 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

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

 

Mtngirl7533's picture
Mtngirl7533
Posts: 85
Joined: Jan 2017

Thank you so much for sharing! It is all invaluable info to me and my husband! Tomorrow will be 4 weeks post surgery and he is starting to do much better! Finally, I see a big difference! Moving more, sleeping less! Taking in some solid foods now! But above all, the pain is finally coming down with alittle help from meds but still before it was intolerable! Just last Wednesday he was in incrdeble pain jsut from a sneeze he had! The surgeon said the xrays looked good and incisions as well! He gave him a longer acting pain med as my husband was easily at a level 9 pain scale. And ever since he has been improving with med and rest. He actually drove into town yesterday for the first time! He realizes he has a long way to go, but a far cry from where he was! He wants to go back to work in another week possibly. He will only be riding and supervising the crew of course, no lifting, no climbing! He is a lead Lineman so he supervised anyways but always enjoyed the climbing and hands on. Dear Loretta, my adopted Grammie has been a blessing as well and I am grateful for her advice and experience! I have more questions for the surgeon next trip. I hope I haven't been unitentionally misleading as I am lacking sleep and alot on my plate but the docs removed the lymph nodes and tested them as they did the surgery. The ones closest to the tumor were shown to have cancer, the ones further out were clear. They had a big board meeting and decided he didn't need more chemo. I was a littel unsettled about that but am not experienced with these things. My thoughts were, why not chemo and be absolutely sure nothing is floating around that they cant see? But anyways, going to ask about it for sure. just a little update! Alarm set early as I am going back to work. I feel he will be fine at this point and able to care for himself. I will do j tube and any tretaments in the afternoon when I get home. He has tube feedings overnight anyways. I have been out for a month and need to get back. Bills dont stop coming in, lol. Thank you again Paul! It is truly appreciated! God bless

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