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Esophagectomy

rpmm
Posts: 5
Joined: Mar 2013

I hve been recently diagnosed with Esophageal Cancer.  It was found during a routine follow up endoscopy for Barrett's Esophagus. Since the positive biopsy, I have had a CT scan of my chest and abdomen, which was clear except for two small nodules in my lower left lung; I then underwent an endoscopic ultrasound.  The EUS placed the adeniocarcinomia with signet ring morphalogy at the GE junction and was smal, only 1/16th of an inch and was still superficial, T1. Biopsies of the surrounding lymph nodes all came back clear. My gastroenterologist referred me to a University Hospital where the doctors recomended an Esophagectomy. I will not have to undergo Chemo or Radiation. I am only 43 years old, wife, mother of two, and work full time and am trying to prepare myself mentally for the challenges ahead after surgery. Can anyone give me some insight as to recovery time and what to expect after the surgery.  I have chosen to have the open procedure, THE, (Trans Hiatial Esophagectomy). I know I am blessed for the cancer to be detected so early, but I am still having a tough time emotionally regarding the surgery.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hello rpmm

Welcome to this discussion page. I was a caregiver for my dad. He passed from EC in March 2010.

My dad's tumor was at stage 4 at the GI junction, when diagnosed. He could not have surgery. You,

being able to have surgery is a positive plus. Along with it being small, and caught early. There are many

survivors here that will reply to you. Stay positive, keep the faith, and stay in touch with us on this page!

Tina in Va

 

rpmm
Posts: 5
Joined: Mar 2013

Thank you so much for the positive words.  I am so glad that I found this website, I am hoping to hear from not only survivors but also from people like you, who are in your own way a survivor.

bingbing2009
Posts: 179
Joined: Feb 2011

 

 

 

This is what happened when Melinda had surgery. Melinda will be called ‘M’ because I’m a lazy typist.

 

EC T3N1M0. Ivor-Lewis, 2-16-10. Surgery and hospitalization was at a private, religious hospital that is regarded as the best facility in our region. There were 2 surgical teams, a cancer team and a thoracic team. We were told the cancer team would go first. They would remove the cancerous area and stabilize what was left of the stomach. This would take 3-4 hours. The thoracic team would go second. They would do the pull-up and reconstruction. This would take another 4-5 hours.

 

We got to the hospital about 6:30 am on a Tuesday. M was taken back for prep. I saw her 45 minutes later. She was wearing a gown with her butt hanging out, and several IV tubes. She was already under the effect of drugs and her spinal tap was in place. The onc surgeon came in for a few minutes and then M was wheeled away for surgery. This about 8 o’clock.

 

Around 11:30, the onc surgeon met with me and said the thoracic team was in the OR. The cancer team’s part of the surgery went well and M was doing OK. There were no visible signs of mets to the liver or any other organs.

 

Around 2, the nurse on the thoracic team called me in the waiting room and said the surgery was going well and M was doing fine. There were no visible signs of mets to the lungs. Around 4, the nurse called me again and said they were closing and the surgeon would see me in a few minutes. At 4:30, I met with the thoracic surgeon. He was everything went well, he saw nothing in the lungs and M was in recovery. He said the next 72 hours were critical, because several things could happen and none of them were good. His biggest concern was the stomach dying. A normal stomach has 4 major arteries, but after surgery, the stomach only had one artery feeding it blood. Pneumonia was also a major concern.

 

At 5, the nurse from recovery called and said M was in trouble, they couldn’t get her off the respirator and breathing on her own. He called again at 5:30 and said they were still working on her. At 6, he called and said that she was breathing on her own and was in MICU. I was allowed to see her for about 15 minutes. She didn’t know I was there. She had numerous tubes in her. She writhed on the bed and gasped, “oh, oh, oh.” That was the only response she gave to me. When I saw her next, 9:30 that evening, she was sleeping.

 

The tubes in her were:

 

--NG tube. This tube was in her nose and went down into her stomach.  The stomach had been severely traumatized and it excreted various kinds of fluids, ranging in color from green to brown to a mixture. The NG tube was connected to a pump to pull out these fluids and let the incisions heal.

 

--Oxygen tube. This was in her nose.

 

--Chest tube. This was in her lower right side/back and was connected to a plastic container. It was leaking reddish fluid.

 

--Central IV in her shoulder. This is the IV that is responsible for many infections in the hospital. The nurses should only touch it with gloved hands and should clean all the openings with alcohol before accessing it.

 

She had many bandages and was wearing a large velcro strap around her stomach to stabilize her incision.

 

She was in MICU for 3 days. I saw her 4 times a day, for 30 minutes each time. The first thing I did when she was in MICU was give the nurse my cell number and have her write it on a sticky note on the front of M’s file, so they could reach me. M gradually got better and became aware I was there and would talk to me. She sat up in bed on the second day. On Friday, the catheter was removed and she was transferred to a room on the thoracic floor. She was heavily drugged, and wasn’t feeling much pain. She was laughing and optimistic. She called her sister and some of her friends.

 

Friday evening, M decided she hated the NG tube and she kept trying to pull it out when she dozed off. This tube cannot be moved, since it cannot be reset, so I had to watch her closely and stop her from pulling at it. This was the night when the nurse decided she was suffering too much. He violated protocol, opened her morphine pump and set it to continual drip. When the shift changed at 7 Saturday morning, the nurse practitioner came into the room. I was sleeping on a cot. The NP found M unresponsive, with her oxygen level in the 60 percent range. He started screaming, “I want respiratory here NOW!” and nurses came rushing into the room, about five or six of them. The team worked on M for about 30 minutes, giving her injections and covering her with blankets and turning the heat way, way up. She finally responded. The NP told me she had been about 30 seconds away from being taken to cardiac intensive care and calling a heart surgeon. The records showed the morphine had been dripping all night at several times what the surgeon had ordered, and neither a nurse nor a respiratory therapist had been to check on M since 2 am. Both the nurse and the RT were disciplined and suspended.

 

M was traumatized by this ordeal and refused to use her morphine pump afterwards, so she was in more pain than she should have been. She stayed in the hospital for six more days and was released the following Friday.

 

MAJOR EVENTS:

 

--The OD fiasco.

 

--Passed the ‘leak test’ on Monday morning, so the NG tube was removed.

 

--Stomach incision became infected and was ‘opened up’ by the surgeon on Monday afternoon. It became infected at both ends and began ‘tunneling’ or growing toward each infected site beneath the skin. This treated with antibiotics and a ‘wet-dry’ bandage, when gauze soaked in sterile saline solution is packed into the wound with a long cotton swab and then it is covered with a dry gauze. This has to be removed and repacked each day by the caregiver once the patient goes home. I learned that pink wounds aren’t ‘healthy’ as I’d previously thought. Pink means danger. A wound that is healing normally should be brownish, like raw hamburger that’s been exposed to air. The wound bled profusely each day when I removed the dressing, but this was good---‘blood is our friend’ the nurses told me.

 

--Chest tube removed on Wednesday.

 

--Biopsy results on Wednesday. The tumor still had some living cancer cells in it, so the chemo/rad hadn’t been completely effective. 27 lymph nodes had been removed and all were negative. The onc surgeon said M wasn’t a T3 when he saw her in the OR but was a low T2 and maybe a T1.

 

LESSONS LEARNED:

 

--A caregiver will probably be unpopular. I exchanged words with several nurses during M’s hospitalization, over inattention, poor sanitation, etc. Nurses are like the normal bell-shaped curve. There’s a few excellent ones on one end of the curve. There’s a few horrible ones on the opposite end of the curve. Most are in the middle. They’re all overworked. I also butted heads with one doctor because M was having panic attacks and I finally got her some Xanax, which helped.

 

--Nurses work in 12 hour shifts. Each shift has what is called a ‘charge nurse’ or a ‘lead nurse.’ This is the most experienced nurse, the supervisor. If you find a nurse who’s good, go to the charge nurse and ask that this nurse be reassigned to your patient the next shift she works. I never had any problem doing this.

 

--I felt confident I could physically handle M, so I learned how to unhook and then reconnect all of her tubes. I got her out of bed and put her in her recliner. I bathed her with soap and a washcloth. I put her on the portable toilet and reported how much her kidneys produced—another post-op concern. I took her for walks around the unit. The surgeon wanted her to walk twice a day, but I pushed her to walk 3 or 4 times a day. If you can’t do this, then expect a wait before the nurse can do it. If you have a male family member or a male friend who comes to visit---put them to work helping with a walk or whatever.

 

--Remove the patient’s eyeglasses before breathing treatments. The fog from the treatment will coat on glasses and is difficult to remove.

 

COMPLICATIONS:

 

--Infected incision.

 

--Elevated heart rate. Called ‘Tachycardia.’ M’s pulse was around 150, very dangerous, and required medication. Common after this type of surgery.

 

--Elevated blood sugar. Dangerous and required medication, injections in her stomach. Common after this surgery.

 

--Lung problems. Requires hard work on the spirometer, for lung exercises. Common after this surgery.

 

HOME:

 

--Flushing feeding tube.

 

--Loading, maintaining feeding pump. This device weighs about 20 pounds and will not roll on carpet so it has to be carried to the bathroom, etc. I used a 20 foot extension cord, plugged it in, and carried it for M. We tried feeding her at night, during the day, in between. It’s a pain in the rear regardless and can only be tolerated. I tried to get 2-3 cans of formula into her each day---about 400-600 calories. It took about 12 hours to get this much into her. The sweet little dietician at the hospital gave us a diet to follow when we got home. It was worthless. The thoracic surgeon, a man who trained at the Mayo, taken part in many trials for EC and has written numerous papers on EC, said, “Eat whatever you can eat. What’s healthy for a heart attack victim isn’t healthy for an EC patient. EC patients need calorie dense foods with lots of protein.”

 

He told us M should eat anything that appealed to her. If it made her sick, don’t eat it again for a few weeks and then try it again. For several weeks after her surgery, she couldn’t eat anything without getting sick. A spoonful of peanut butter was the first real food she ate. Then some cheese after a time. Then cereal with soy milk after a time. A KFC chicken breast was her first true meal and this was probably 6 weeks post-op. She ate almost half of it, sitting at a picnic table at the lake. I was so proud of her.

 

Today, March 7, 2013, M is 3-plus years post-op. She has returned to teaching and has missed only one day in 3 years.  She lives a busy, full life and is an inspiration to everyone who knows her...family, friends, coworkers, students. She is a true success story.

Vaughn, caregiver to Melinda

DX October 2009:  T3N1M0

November and December 2009:  chemo (Cisplatin and 5 FU) and radiation

February 2010:  Ivor Lewis surgery

 

 

 

rpmm
Posts: 5
Joined: Mar 2013

Thank you so so much for all of the information.  I have already made my husband start taking notes.  Your response has made me feel a lot better regarding the surgery and knowing what to expect after the surgery.  I really appreciate it. I have another appointement at the University hospital on the 14th, so you certainely have provided me with a lot of information to discuss with my doctor. Thank you again.

paul61's picture
paul61
Posts: 1116
Joined: Apr 2010

Hello and welcome to our group.

Like you, I was diagnosed relatively early and my tumor was at the GE junction. After my EUS I was staged as Stage 1 and went directly to surgery. I had the traditional open surgery often referred to as an Ivor Lewis procedure. This is a trans-thoracic approach so a bit different than the trans-hiatal approach in that one of the two incisions is in the abdomen and one in the back.

I was in the hospital for about 12 days. I was in the Intensive Care Unit for three days and in a standard room on the thoracic surgery ward for the remainder of the time. I was in the hospital for two days longer than expected because my surgical incisions became infected and I was on IV antibiotics to clean that up.

The hospital did an excellent job of pain management and all in all (with the exception of the wound infection) things went very well.

The surgical procedure removed 75% or my esophagus and 25% of my stomach. In addition, they removed 22 lymph nodes in the area adjacent to the tumor site.

I was on IV nutrition for five days after surgery. On day five they did a barium swallow test to insure there were no leaks in the incision between what was left of my esophagus and my modified stomach. Since the test was successful I started on soft foods on day five and was on a soft food diet when I was discharged from the hospital.

I went home with a Jejunostomy Tube (j-tube) installed to provide additional nutrition while I learned how to eat with my new stomach.

Unfortunately for me, the pathology of the lymph nodes removed in surgery indicated that one of the nodes had active adenocarcinoma cells. As a result, I had to complete 18 weeks of adjuvant chemotherapy. The chemotherapy slowed my healing and recovery substantially. I would say it was three months before I was physically healed from the surgery, and almost a year before I felt like I was back to feeling 100% recovered. But again, I should stress that the chemotherapy probably cost me 4 months of recovery time.

I am now three years post surgery and am able to eat almost anything I want and do pretty much what I would like to do physically.

I do have to eat approximately seven times a day. My meals are about half the size of the meals I used to eat. I avoid all foods that are high in sugar. I sleep with my chest elevated above my abdomen to insure reflux is not an issue. Those are pretty much the life style changes the surgery has created.

Below I will include some information you may find helpful:

A description of a “j-tube” and the benefits it provides. It sounds a bit frightening at first but you will find it easy to deal with and very beneficial.

 http://www.dukehealth.org/cancer/health_library/care_guides/treatment_instructions/jejunostomy

A description of the surgical approach your surgeon has selected:

http://surgery.med.umich.edu/thoracic/patient/what_we_do/esophagectomy_faq.shtml

An overview of the menu recommendations you will be given when you leave the hospital:

https://healthonline.washington.edu/document/health_online/pdf/Esophagectomy_Diet_3_11.pdf

  

If you would like to speak to me about my surgery I would be happy to talk to you. Just send me an email via CSN mail and I will send you my contact information.

You are very fortunate to be diagnosed at such an early stage. You have an excellent chance of a positive outcome.

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 - Three Year Survivor

 

joymitch
Posts: 16
Joined: Dec 2012

My husband Paul's story is very positive and I thought you might enjoy hearing it.  Paul was diagnosed with stage II EC in the fall of 2012, had chemo and radiation followed by MIE (minimally invasive surgery) on February 19, 2013.  He was in ICU 1 1/2 days, transferred to a step down unit, returned home on February 27, and is doing remarkably well.  He does have a temporay feeding tube and takes only liquid Tylenol for pain.  His surgery was performed by Dr. Walter Scott at Fox Chase Cancer Center in Philadelphia, PA.and I highly recommend him.  There is a wonderful doctor in Pittsburgh, PA, Dr. Luketich, that does the most MIE EC surgeries prior to chemo and radiation. Both of the hospitals have facilities that out of town family members can stay for free.  I am wondering why you are not having the MIE surgery.  Please feel free to contact me if I can answer any questions you may have.  Joyce 

rpmm
Posts: 5
Joined: Mar 2013

Thank you so much Joyce for your reply.  I did consider MIE, but the University Hospital that I am going to does not perform MIE.  However, when I read your reply and you mentioned Dr. Luketich, I am now reconsidering.  My doctor at the Univesity hopsital is wonderful and he actually mentioned Dr. Luketich to me.  Both hospitals are six hours away. I have already called my doctor to see if I can find out more information about the MIE and if he can put me in touch with Dr. Luketich.  I don't want to put things off, but I feel I do need to have all the information available before I make a decision on this major type of surgery.  Do you know what benefits the MIE provide vs the open procedure?  Robin

joymitch
Posts: 16
Joined: Dec 2012

Robin, Paul almost went to Dr. Luketich but we decided to stay "local" for his MIE.  I am going to try to email you separately, with information on how to get in touch with his office.  Joyce

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

My husband's surgery is scheduled for March 22nd. We have both quietly wished for an alternative to surgery. Bottom line for this beast is...surgery. Tonight we went to the University of Michigan Esophagectomy Support Group. It was amazing. Everyone was so informative and answered all of our questions. It was really nice. We met a 21 yr survivor, a 2 year, 5 year, all the way down to 3 months. The biggest problem seems the same for most. What to eat and how much to eat. It seems to be a learning process. I would suggest to check and see if your hospital has such a group. If not suggest they form one. It really helped us alot. Good luck to you.

rpmm
Posts: 5
Joined: Mar 2013

Thank you so much for your reply.  I wish you and your husband the very best during this difficult time.  I think it's wonderful that you were able to find a support group.  I don't think the hospital I'm going to has one, they were going to try and have a patient who underwent the surgery to call me and let me know what to expect, but so far they haven't been able to find anyone in my age group.  I am still very glad that I have found this website though.  The responses I've been receiving have made me feel a lot better.  Again good luck on your husband's surgery.  Robin

South Side Steve's picture
South Side Steve
Posts: 23
Joined: Nov 2011

 

Robin, 

I know exactly what you’re going through; I had my Ivor Lewis surgery a year ago. It’s a major surgery, but at your age, you shouldn’t have any problem making a full recovery. I was in the hospital for 10 days and the only major problem I had was a bout with atrial fibrillation on day 3. My heart rate was between 160 and 220 for over 2 hours. It’s common for the heart to act up during this surgery because they’re working in the area around it, but the heart usually settles down quickly. Mine didn’t. Other than that, I didn’t have any major problems. I had my swallow test on day 4 and had the NG tube removed on day 5. I was also able to have ice chips and water after my swallow test. From there I progressed to liquids and soft foods. I had 2 chest tubes and lost them on days 8 and 9. I had a feeding tube (J tube) for 5 weeks after I was released from the hospital, but I never needed it for supplemental nutrition. The doctor wanted to keep it in place just in case I would need it. 

I went back to work at a desk job 2 months after my surgery. I had chemo and radiation prior to my surgery and because my surgery pathology reports came back clean, it was decided I didn’t need any post-surgery chemo. It is a long recovery, but I feel great now. I can eat just about anything I want to eat; I just have to avoid spicy and acidic foods. Also, I have to eat smaller portions. My only real major lifestyle change is I have to sleep with my chest and head elevated. I bought an adjustable bed and haven’t had any problems with acid reflux.  

I found it very beneficial to talk to other survivors before I had my surgery. If you want to ask me any more questions, please feel free to message me and I will give you my contact information. You’re 20 years younger than me, so you should have no problem bouncing back after your surgery. Good luck! 

Steve Wendt

DX 11/2011 (T2N1M0 Stage IIB), Chemo and Radiation 11/2011 – 1/2012, Ivor Lewis Surgery 3/13/2012

 

cindyhils's picture
cindyhils
Posts: 31
Joined: Apr 2010

I am 3.5 yrs from chemo radiation and THE surgery. i was diagnosed at 47 yrs old. you will do fine with the surgry. i was a stage 2B.  i am doing very well.  i had complications after my surgery but  i was still back to work exactly 2 months from getting out of the hospital.  i highly recomend having the surgery.  it is the only way to be sure this cancer will be gone.  i am a mother of three and when i got home my husband was my nurse.   good luck!

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

 

RPMM:

I also had early Stage I adenocarcinoma, and I had the MIE at Massachusetts General Hospital in September 2011.   They took ½ of my esophagus, ¼ of my stomach and 28 lymph nodes, and my pathology report came back clean: both margins and lymph nodes.  So I didn’t have any chemo or radiation, before or after surgery, for which I feel blessed.  And with the MIE all I had were 4 small (3/4”) incisions across my belly, 1 small hole in my side where I had a chest tube, and a 1.5” incision on my back.

I was in the ICU for 2 days, although the 2nd day was only because they didn’t have a room for me yet on the Thoracic Surgery floor.  I was in the hospital for a total of 6 days and came home with a J-tube, which I had for 3 weeks for supplemental liquid feeding at night only.  Diet will be a challenge for you at first, but as others have said it’s just a matter of getting used to your new, realigned digestive system, and after you go through your own series of ups & downs, occasional overeating (BIG mistake!), diarrhea, etc., you will get used to it.  It’s an adjustment, to be sure, but from what I’ve read on this and other boards over the past year and a half, I think it’ll be easier for you and me because our systems weren’t subjected to chemo or radiation, like most EC survivors are.

In addition to all the good info that Paul gave, I’d also recommend the dietary recommendations at http://www.upmc.com/patients-visitors/education/nutrition/Pages/esophagectomy.aspx.  My surgeon, Dr. Chris Morse, did a fellowship with Dr. Luketich to learn the MIE a few years ago, and he had me follow the UPMC diet: 1 week at each stage, and by the 4th week I was eating pretty much anything I dared to…just much less than I did before my surgery.  I lost 30 pounds after the surgery and haven’t gained any of it back, but on the other hand I was about 30 lbs. overweight so that isn’t an altogether bad thing.  It’s a hell of a weight-loss program that I wouldn’t recommend to anyone! lol  But similar to Paul, I eat 6 times a day, and other than sugar, which is a problem for all gastric surgery patients, there are only a couple of things that give me problems so I don’t eat them.

Other than the occasional bouts of gastric discomfort and occasional diarrhea, which you can probably expect for the rest of your life, life is really good.  I always have granola bars and/or trail mix with me in case it’s time to eat and I’m working or something, but I work the same as before, including travel (I’m off to Singapore and Vladivostok on a 10 day business trip in a couple of weeks), I eat pretty much the same things as before (I can’t overemphasize the “not as much at a sitting” part of that!) and like folks on these boards say from time to time about the relatively minor dietary inconveniences, it beats having cancer!

Whenever I say that I am painfully sensitive about our Stage 4 friends, who will probably have cancer for the rest of their lives.  But you and I and most other surgical candidates are blessed to at least have the opportunity to hopefully be cured and, while I’m not a particularly religious person, I feel enormously blessed for the excellent doctors who found my cancer early and probably saved my life.

Anyway, you may not be lucky to have cancer in the first place, but you definitely are lucky that they found it early.  You’ve got a rocky road ahead of you, but it’s all doable and you will find tons of support here and on other support websites.  Don’t worry too much about the surgery, although I think you’re definitely doing the right thing by researching alternative procedures, surgeons and hospitals.  My advice is once you’ve made a decision about what, where and when, follow the advice of your medical team and just go with it.  Cancer is a scary thing, there’s no way around that, but you will be in good hands and will come through this just fine.

 

FEC,

Bob

T1aN0M0

Dx     8/3/11

MIE 9/23/11

  

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