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Stage 2b Esophageal Cancer

Firefighter Jon's picture
Firefighter Jon
Posts: 10
Joined: Jan 2013

Hi Everyone, My husband Firefighter Jon dx 9/19/2012 stage 2b esophageal cancer. Chemo/Radiation completed 12/3/12 5 weeks. Chemo every week and Radiation everyday. We had the Petscan, Pulmonary Function Testing,Endoscopy. Just completed the pre-op appointment. Surgery is to be done 1/14/2013.  He is a Survivor of all this so far. We now have the Big surgery.

We live in Rochester,NY and the surgery will be done at the University of Rochester by Dr. Jeffrey Peters thoracic surgeon. We were told the surgery will take 6 to 8 hours and it is a very serious operation.  We have a positive outlook and at the same time scared. If any one can explain the surgery I have read tons of stuff on the internet but i need some input from someone who has been on this journey.  We are new to this site and have read some of the postings. This is truley a BEAST of a cancer.

Prayers and Hugs

Bev and FireFighter Jon

Sally.L
Posts: 38
Joined: May 2012

Hi Bev & FireFighter Jon.

My husband (age 63) was diagnosed stage 3 back in May of 2012. He had a minimally invasion esophagectomy at the IU Cancer Center in Indianapolis on August 31, 2012. Everyone’s experience seems to be different and it is a very dangerous surgery with great potential for complications. My husband’s surgery took 7 hours; he was in ICU one night then moved to a private room where he stayed for 8 more days. He’s surgery went according to plan, no complications to speak of and he was back to work in 8 weeks – although not at full speed. All of his test results came back indicating the cancer was gone. He had a clean scan in December and is doing remarkable well. He struggles some with eating, he doesn’t have much appetite and he has to eat slowly. He is still plagued by a cough that won’t seem to ever go away completely. We were more fortunate than many people who go through the surgery. I would just suggest you make sure your husband’s surgeon is extremely experienced in this particular operation and the hospital staff is as well. It can make all the difference in the world. Best of luck with the surgery. A positive attitude is definitely a big plus and a sense of humor doesn’t hurt either although it’s hard at times. Please let us know how everything goes.

Sally

paul61's picture
paul61
Posts: 1115
Joined: Apr 2010

Hello Bev,

 I was diagnosed with esophageal cancer in October of 2009 and had an esophagectomy in December of 2009. There are a number of variations to the surgical technique for surgery to treat esophageal cancer. The three primary approaches include:

First the traditional Ivor Lewis (IL) approach. In this approach two large incisions are made. One in the abdomen between the belly button and sternum and one from just under the right shoulder to the middle of the patient’s back. The abdominal incision is used to release the stomach so it can be modified and moved higher to be connected to the remainder of the esophagus. The back incision is used to enter through a space in the ribs to remove a section of the esophagus and form the new connection between the remainder of the esophagus and the remainder of the stomach.

Many surgeons around the US perform this surgical approach.

This approach is the most invasive of the approaches and typically has the longest recovery time. I had this particular surgery and I was in the hospital for 12 days. The original estimate was 10 days but I got an infection in my incisions and was there an extra two days while they gave me IV antibiotics.

Second the Transhiatal Esophagectomy approach. In this approach a large incision is made in the abdomen between the belly button and sternum and a smaller incision is made in the patient’s neck. The abdominal incision is used to perform the same functions as in the IL approach described above. The incision in the neck is used to remove a section of the esophagus and to form a new connection between the remainder of the esophagus and the remainder of the stomach. A more detailed description can be found at http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml

  Dr. Mark B. Orringer at University of Michigan Medical Center is a leader in this surgical approach.

 The in hospital recovery time for this approach is shorter than the IL approach and the recovery time is somewhat shorter.

 Third the Minimally Invasive Esophagectomy (MIE) approach. In this robotically assisted approach a number of very small incisions are made in the abdomen and in the neck. The surgeon uses the robot “arms”  and cameras through the small incisions to release and modify the stomach, remove a section of the esophagus and a section of the stomach and re-attach the remainder of the stomach and esophagus. A more detailed description can be found at http://www.thoracicsurgery.medicine.pitt.edu/content/Minimally_Invasive_Esophagectomy.pdf

  

Dr.  James D. Luketich at  University of Pittsburgh Cancer Institute is the leader in this surgical approach.

 The in hospital recovery time for this approach is the shortest of the approaches and the recovery time is shorter as well.

There are a number of reasons why a surgeon may recommend one approach over another. The area around the esophagus has a number of lymph nodes connected into the lining of the esophagus and frequently a number of these are removed to insure a clear surgical margin around the cancer and for pathological examination to validate the staging done prior to surgery. In some cases, prior surgical scar tissue and other medical issues may dictate one approach over the other.

 Be sure you understand your surgeons reasoning for selecting one approach over the other. “I don’t do that approach” is not the answer you are looking for. This is MAJOR surgery and you want to have a surgeon that does MANY of these surgeries a year.

When I had my surgery I did not even know an MIE was available. Given my experience, if I had it to do over again I would have traveled to a major cancer center and found a surgeon who is competent in MIE.

Of course you need to be comfortable with your surgeon and insurance is sometimes an issue. But I wanted to you be aware that there are choices and you should make an informed decision.

My experience with Ivor Lewis surgery included an approximately 7 hour surgery. I was in the intensive care unit for three days and in the hospital for a total of 12 days. They had initially estimated my hospital stay would be 10 days but I contracted an infection in my surgical incisions while in the hospital and that took a couple of extra days to clear up. It took be about six months to get back to eating normally and about a year until I was back to feeling like I was fully recovered from the surgery. My post surgical pathology showed one of the twenty two lymph nodes they removed had active cancer cells so I completed five months of post operative chemotherapy. I am sure that slowed my recovery time.

 Three years later I am back to eating and doing pretty much what I want. Of course I have regular check ups with my oncologist and so far I have been fortunate enough to get clear scans.

 If Jon would like to speak to someone directly who has had the surgery I would be happy to give him a call if you send me your telephone number via private message.

I know the surgery sounds daunting but if you have a well trained experienced surgeon and are treated in surgical facility that does many of these complicated surgeries survival is a real possibility.

  

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

 

Firefighter Jon's picture
Firefighter Jon
Posts: 10
Joined: Jan 2013

Just read the posts. Wow all this good information. Paul you are the BEST. Went to the thoracie web site great information. Jon will be having the Ivor Lewis approach. The MIE is not an option per Dr Peters. He has done many of these and advised because of where the cancer is located IL is the best for survival. Jon has had reflux disease for several years. He is now 67 years old retired from the Fire department. You know you take the Zantac and away reflux goes. He never had a endoscopy because medication always corrected the problem. It was discovered when he went to the ED for dehydration. (passed out in the yard doing yard work neighbor saw him called ambulance away he went to the ED. I work at the University of Rochester so I was there before he was. Well make long story short everything checked out OK.  The ct showed something in the esophagus so the discharge instructions advised to have a scope done.  That changed our lives.  Surgery will be Monday 1/14/2013. He has never had surgery just minor hand surgery. He was in a building colaps along with 13 other firefighters years ago made it out ok now has nephrolithiasis they think it is part of the injury. The Chemo made it worse but thank God that is over with for now.  Our kids are taking us to dinner Saturday,Sunday clear liquids and Monday the big day.

Paul I am not sure if Jon will call he is a mush! but I love him anyway. I know he is scared

but all the prayers and suport from everyone will keep us going.

Hugs and Prayers

Bev and Firefighter Jon

 

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

I had the Ivor Lewis procedure Nov 14th 2012.  An upsde down looking smiley face incision across upper abdomen below rib cage, an incision on right back between ribs and a couple of incisions where they placed drainage tubes on my right side as well.  Surgery was about 6 to 7 hours and I was in the hospital for 8 days.  After surgery I had a Nasal/Gastro tube to keep everything away from esophagus site and this tube was the one I hated the most and celebrated the most when it came out at Day 6.  I never really had unbearable pain as the Pain medicine IV I had control of and kept pushing the button every time it lit up.  There were just a couple of times that the nurses overrode and allowed me a little more of the pain meds.  I had 2 drainage tubes with suction on them on my right side,  a Catheter to bladder, and a J Tube for feedings.  I did have a few bouts with keeping my O2 Saturation and breathing rate up but that was mainly when I would go to sleep. 

They had me up and walking the same night I had the surgery and although it took awhile to get up and about it made me feel good to know I was able to do that after major surgery.  They had me up about every 4-6 hours.  Respiratory therapy every 6 hours I think and was important to keep from getting pnemonia. 

Cotton mouth was a problem for me because you can't let anything go down your throat.  Nurses swabbed my tongue with a sponge and Biotene? I think and at first it was great but then it just seemed too sugary and didn't give me the relief I wanted.  After a couple of days they did allow me to brush my teeth and rinse with a suction tube in my mouth similar to what a dentist does.

Only nausea I can remember was more a gagging reflex from the Gastro Tube through my nose to my stomach and I was able to work through that.

My catheter was the first tube to come out on day 4.  Nasal Tube and the drainage tubes on day 6. 

When I came home I started 7 containers a day of formula fed through the J tube at a set rate sorta like an IV except it is going into the small intestine.  Was not allowed anything orally until I had a successful barium swallow leak test which was a week or so after I left the hospital.  I never had hunger pains or craved eating anything as the furmula feedings did a good job.  After the leak test I was able to eat and my first meal was a few Chik Filet Nuggets.  Mmmm Mmmm Good.  Over the next 5 weeks I reduced the amount of formula through the J tube and increased the amount I was eating.  It was slow going at first and my visit on Jan 4th I was not quite able to maintain my weight and still have my J Tube in.  Since then though I have not been taking formula and I'm able to maintain my weight.

My surgeon only did the Ivor Lewis procedure and offered to allow another surgeon do the MI procedure but after listening to his reasoning (Better access and ability to work) and with the problems they have had with the MI in my area I elected the Ivor Lewis. 

Hope this helps with some of the things to expect.  I craved an Ice Cold Glass of Water while in the hospital and I would try to bribe my nurses and folks that pushed me in a wheelchair to Xray to stop by a Smoothie King that was in the hospital and let me grab a smoothie.  Of course they didn't but it wasn't from me not trying. LOL 

Good luck with your surgery and look forward to hearing more after it's successful and you're back home.

 

 

 

Firefighter Jon's picture
Firefighter Jon
Posts: 10
Joined: Jan 2013

Thanks so much Rick for taking the time to explain your hospital stay. Myself and Jon read it together. It really helps with the steps you outlined. This is a great site so glad we found it.

Take care will let everyone know after surgery Monday

Prayers and Hugs

Bev and Firefighter Jon

o2bnsf
Posts: 19
Joined: Oct 2012

Rick, thank you.  My husband's ivor Lewis is also on Monday.  Sharing the details helps to take the edge off the building anxiety.

Pat

BMGky
Posts: 666
Joined: May 2010

Good luck on the surgery!!  My husband was 70 having his IL.  He has post-op fibrillation, severe, unexpected, and it kept him in ICU for nearly two weeks.  Then, due to not being able to get a scan to the satisfaction of his surgeon, he was in the hospital another 14 days.  Hey.  I appreciate his thoroughness.  He didn't want any leaks or other issues.

The j-tube was a godsend.  The tube site had some issues.  Recovery, for some as was for my husband, takes a while.  It was nearly six or seven months before he started really feeling good.  That was three years ago.

He still has to be careful with his eating.  Avoids excess sugar and milk products.  Does not mix liquid with food, separating the same at least 20 minutes apart or longer.  Yet, he can eat steak and eggs and just about anything he chooses to.  Foods with a dense thick texture such as mashed potatoes, doughy yeast rolls, etc., must be eaten rarely and only in very small portions.  It is a learn as you go process.

He still practices everyday.  Is very busy.  And loves being alive.  Yes.  There are trade offs at times but really, insignificant to what others face.

Please keep us posted and ask any question.  Everyone wants to help.

 

BMGky

o2bnsf
Posts: 19
Joined: Oct 2012

Thanks for the information.  It is so good to hear that it is possible to get back to a pretty normal life!

pPat

bingbing2009
Posts: 179
Joined: Feb 2011

You will be in my thoughts and prayers. Good luck tomorrow. This is a tough road, with lots of rollercoaster ups and downs, but you can get through this. Just remember to take it one day at a time.

Melinda

DX October 2009:  T3N1M0

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

February 2010:  Ivor Lewis surgery

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

 

Hi Bev and Jon, 

I had the Ivor Lewis surgery in March of 2012. It was a 7 hour surgery and I was in the hospital for 10 days. Other than an episode of atrial fibrillation, I didn’t have any problems while in the hospital. I still remember the joy of getting the many tubes removed one at a time. I don’t know if your surgeon mentioned it or not, but they might fracture a rib during surgery. Apparently, that’s common during the Ivor Lewis. My fractured rib was what gave me the most pain after surgery. I had the J-tube for 5 weeks after going home, but never needed to use it. My doctor told me he could use me as the poster child for this surgery. I never experienced any scar tissue buildup at the junction of my new “stomophagus” and never needed any esophagus stretches after surgery. I went back to work full-time at a desk job 2 months after surgery.  

Like other posters have mentioned, it takes a while to figure out what your new plumbing will tolerate and what it won’t, but other than my previously favorite spicy and acidic foods, I can eat just about anything I want to.  I know prior to my surgery, I was scared of the “drastic lifestyle changes” everyone warned me about. Other than sleeping with my head and chest elevated and eating smaller portions, my lifestyle changes have been minimal. I know that varies for each person and probably depends on how much of the esophagus and stomach have to be removed.  

My thoughts and prayers will be with you both tomorrow. Good luck and keep us posted on Jon’s recovery. 

Steve Wendt 

Diagnosed November 3, 2011 – T2N1M0 Stage IIB 

Radiation & Chemo (Paclitaxel & Carboplatin) 

Ivor Lewis Surgery - March 13, 2012

 

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