What to expect

Mtngirl7533

I will know more after Tuesday when my husband who was just diagnosed with Esophageal Cancer TN3 is seen by Cancer Team. Since Esophagectomy was mentioned, I would like to know from anyone, what to expect. Length of stay in hospital, recovery and what my husband will be able to eat in the future? Above all of what he will undoubtedly endure, he already misses eating solid food! He was put on strict liquid diet due to risk of chocking! I am making healthy smoothies for him! He is also drinking Boost plus as well as having anything on the scant list they gave us:( Any response from someone who has had an Esophagectomy will be most welcome! I know there are different types of procedures! Thank you very much inadvance!

paul61

There are various approaches to esophagectomy surgery

There are various approaches to esophagectomy surgery. Your selection of who does your husband's surgery, and where his recovery takes place is very important to his recovery experience and his long term lifestyle. 

The major 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.upmc.com/Services/esophageal-lung-surgery-institute/Pages/about-us.aspx 

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.

I am now almost eight years out from my esophagectomy, I can eat just about anything (in smaller portions of course). It took me about a year before I was fully migrated from a restricted diet while I learned how to manage my new digestive system. Tell your husband to come back here often with questions as he recovers. Those of us who have been down the road will coach him through the process. 

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
Seven Year Survivor 

Mtngirl7533

Thank you Paul

Thank you so much for all the information and links! It will be good to be informed and take that information and questions with me to our meeting at the cancer center Tuesday! I can’t tell you how grateful I am to you and others for taking time out to do this! I will be a frequent visitor, caretaker and advocate for my husband! He is not techno so he doesn’t mind me doing the this for him! Bless you people for all you do for others! 

Dave Tronnier

Stay strong and know that time will heal your husband.

 

I had stage 3 esophageal cancer diagnosed on September 16 2015.  Your husband is going to need to get some bed wedges to elevate is torso to 30 % while sleeping so he doesn’t aspirate: he’ll also need another wedge that sits right below his butt on the bed that keeps him from slipping down flat. I used a sewing machine to build my pillow/wedge case so that the two wedges don’t separate at night while I’m tossing around in my sleep. Traveling will be hard as the bumps in the road hurt. I had 69 staples on front and had around the same on my back which were dissolving interior stitches. He is going to be very sore for a month + at least. Eating? Well that was hard. I had to undergo 34 dilations over 20 months of time. After surgery my anastimosis/stricture closed to 4 mm where I was unable to even drink water without choking. Spent 30 hours in a hyperbaric oxygen treatment after having 32 dilations and it took, the last two dilations have remained at 15 mm. and I have no further appointments. I now have my feeding tube removed and can eat most foods, Bread sucks and met gets difficult. Sometimes I eat a steak and just swallow what I can and spit the rest out at the table discreetly. I do a lot of regurgitating as I just can’t feel when I’m full and have to empty the last three bites nearly every time. It’s my new normal but it’s ok because it’s better than dead.

 

Bottom line, this is going to be hard, but if he fights hard all the way he will make it back to 90 % normal. Within 2 years. It’s hard but doable.  I went through 25 radiation sessions, 5 weeks of chemotherapy and a Ivor Lewis surgery at Mayo Clinic as well as 30 hours of hyperbaric treatment over the course of 5 weeks. Today I AM ALIVE and doing well. I’ve had to change some things about the way I eat, but otherwise I feel better today than I’ve felt in years. Your husband will be fine in time, lots of time, but he will survive as long as he keeps a positive attitude and your there to offer the support he is going to need. I’m sorry you and your husband are going through this; know that there is light at the end of the dark tunnel. No sugar coating here as this is based on my own experience. I truly wish your husband receives the best of care and keeps his head held high and has the fight needed to survive what is going to be difficult.

 

Trust that it will be ok in time. Stay strong and he will back on track again in time. Peace!

 

LorettaMarshall

Dave Tronnier said:

Stay strong and know that time will heal your husband.

 

I had stage 3 esophageal cancer diagnosed on September 16 2015.  Your husband is going to need to get some bed wedges to elevate is torso to 30 % while sleeping so he doesn’t aspirate: he’ll also need another wedge that sits right below his butt on the bed that keeps him from slipping down flat. I used a sewing machine to build my pillow/wedge case so that the two wedges don’t separate at night while I’m tossing around in my sleep. Traveling will be hard as the bumps in the road hurt. I had 69 staples on front and had around the same on my back which were dissolving interior stitches. He is going to be very sore for a month + at least. Eating? Well that was hard. I had to undergo 34 dilations over 20 months of time. After surgery my anastimosis/stricture closed to 4 mm where I was unable to even drink water without choking. Spent 30 hours in a hyperbaric oxygen treatment after having 32 dilations and it took, the last two dilations have remained at 15 mm. and I have no further appointments. I now have my feeding tube removed and can eat most foods, Bread sucks and met gets difficult. Sometimes I eat a steak and just swallow what I can and spit the rest out at the table discreetly. I do a lot of regurgitating as I just can’t feel when I’m full and have to empty the last three bites nearly every time. It’s my new normal but it’s ok because it’s better than dead.

 

Bottom line, this is going to be hard, but if he fights hard all the way he will make it back to 90 % normal. Within 2 years. It’s hard but doable.  I went through 25 radiation sessions, 5 weeks of chemotherapy and a Ivor Lewis surgery at Mayo Clinic as well as 30 hours of hyperbaric treatment over the course of 5 weeks. Today I AM ALIVE and doing well. I’ve had to change some things about the way I eat, but otherwise I feel better today than I’ve felt in years. Your husband will be fine in time, lots of time, but he will survive as long as he keeps a positive attitude and your there to offer the support he is going to need. I’m sorry you and your husband are going through this; know that there is light at the end of the dark tunnel. No sugar coating here as this is based on my own experience. I truly wish your husband receives the best of care and keeps his head held high and has the fight needed to survive what is going to be difficult.

 

Trust that it will be ok in time. Stay strong and he will back on track again in time. Peace!

 

Mtngrl~Thinking of U & hoping all is going well~write when U can

Dear Mtngrl ~

Reading this letter from Tronnier reminds me that it has been a while since we last heard from you.  The letter above is a testament to what can happen, but doesn’t always.  We sure are sorry to read about all the trouble he has had to go through.  He has it right in that no sugarcoating should be “applied” to patients who need to know about Esophageal Cancer, and what could happen, but hopefully won’t.

A case like he describes is one of the “OPEN” Ivor Lewis Esophagectomies.  It is true that often a person who has that “open Ivor Lewis” often says that they can’t sleep in a regular bed even in an elevated position because of the multiple sutures in their “front and back”.  We know a lady who still sleeps in a recliner and she attributes it to her “open” surgery.  But then there is Paul who invested in a bed that elevates, and that certainly was a smart move.  He can elevate it to a position most comfortable to him.  Having the “open” surgery often takes those patients the longest time to recover with the most probabilities of complications.  Paul had the Ivor Lewis and did have a time with infections, and then also endured post-op chemotherapy.  That’s a double whammy for sure.  But he is now as of today celebrating his 8^th anniversary since surgery of being cancer free. 

That’s why I’m so pleased to know that your husband will be having the totally laparoscopic procedure (MIE) that will involve only 5 small Band-Aid size cuts.  And that’s why we continue to implore all patients to have a second opinion.  While Mayo Clinic in Rochester, MN is ranked as #1 by USNews Health report in the specialty of Gastroenterology and GI surgeries, there are many good places that have Esophagectomies as their specialities.  Believe me this is not the normal EC patient’s story or else that hospital would not be ranked so highly.  Successful surgeries, and morbidity rates are considered in the way a hospital is ranked. 

It will all depend on your choice of a thoracic surgeon and his training as whether he only knows how to perform the “oldest” type of invasive Esophagectomy known as the “TransThoracic Esophagectomy (TTE).  At a major hospital, there is usually several thoracic surgeons and each one may be trained to perform a different type of Esophagectomy.  The ultimate choice is yours to make.  This “open surgery” is what Tronnier has described, and man has he had an awful experience!  Yet I’m happy that he is a survivor.  I’m also happy to know that this isn’t the usual recovery process.  Yet he is a survivor, and that’s far better than being staged as a “IV” and not even having the opportunity to have an Esophagectomy.

It is true that your husband will have to change his eating habits for a time, and his sleeping habits for all time.  I say, “eating” habits for a time, because my husband now eats all he wants to eat of any kind of food with absolutely no swallowing problems or regurgitating.  Yes, he eats more often during the day, rather than the usual 2-platesful of my home cooking as was his usual custom prior to the diagnosis of EC, Stage III (T3N1M0).

I’ve often said he is a poster boy for the Esophageal cancer patient.  Five days in the hospital and downtown shopping with me on Day 8.  His recovery was rapid, and energy level returned to normal within I would say 6 months at most.  We toured 3 states while recuperating in Pittsburgh during the first 3 months, and my husband did all the driving.  He’s always been a hard worker, and now his only deterrent is that he will be 81 in February and I will be 79.  Everyone our age knows how energy levels decrease whether or not you’ve been through a cancer experience that required a major operation, which your husband will certainly go through.  Then we hope that you’ll still be writing here, helping others when your young husband is 80 years of age!

We haven’t heard from you lately, but we understand that holding down a full-time job working and being at your hubby’s side helping him in every way possible, as he is undergoing his pre-op chemo and radiation, is a 48-hr. job in a 24-hour day.  But I’ve sent you so much info heretofore that you will have a good idea of what surgery can entail, plus the dietary demands afterward.  But it’s still one day at a time, and each patient’s story will be different.  As always our hope is that all is going well thusfar, and will continue to be so for your husband, as it did for mine way back when!  Fill us in when you can, but we understand how busy you are.  

Love & prayers as always,

Loretta (Celebrating my husband’s miracle of full recovery every day and we’re now into Year 15! With no complications and no recurrence.) His DX 11-2002/ neoadjuvant chemo/radiation then MIE @ UPMC by Dr. James D. Luketich May 17, 2003.)

Mtngirl7533

Dave Tronnier said:

Stay strong and know that time will heal your husband.

 

I had stage 3 esophageal cancer diagnosed on September 16 2015.  Your husband is going to need to get some bed wedges to elevate is torso to 30 % while sleeping so he doesn’t aspirate: he’ll also need another wedge that sits right below his butt on the bed that keeps him from slipping down flat. I used a sewing machine to build my pillow/wedge case so that the two wedges don’t separate at night while I’m tossing around in my sleep. Traveling will be hard as the bumps in the road hurt. I had 69 staples on front and had around the same on my back which were dissolving interior stitches. He is going to be very sore for a month + at least. Eating? Well that was hard. I had to undergo 34 dilations over 20 months of time. After surgery my anastimosis/stricture closed to 4 mm where I was unable to even drink water without choking. Spent 30 hours in a hyperbaric oxygen treatment after having 32 dilations and it took, the last two dilations have remained at 15 mm. and I have no further appointments. I now have my feeding tube removed and can eat most foods, Bread sucks and met gets difficult. Sometimes I eat a steak and just swallow what I can and spit the rest out at the table discreetly. I do a lot of regurgitating as I just can’t feel when I’m full and have to empty the last three bites nearly every time. It’s my new normal but it’s ok because it’s better than dead.

 

Bottom line, this is going to be hard, but if he fights hard all the way he will make it back to 90 % normal. Within 2 years. It’s hard but doable.  I went through 25 radiation sessions, 5 weeks of chemotherapy and a Ivor Lewis surgery at Mayo Clinic as well as 30 hours of hyperbaric treatment over the course of 5 weeks. Today I AM ALIVE and doing well. I’ve had to change some things about the way I eat, but otherwise I feel better today than I’ve felt in years. Your husband will be fine in time, lots of time, but he will survive as long as he keeps a positive attitude and your there to offer the support he is going to need. I’m sorry you and your husband are going through this; know that there is light at the end of the dark tunnel. No sugar coating here as this is based on my own experience. I truly wish your husband receives the best of care and keeps his head held high and has the fight needed to survive what is going to be difficult.

 

Trust that it will be ok in time. Stay strong and he will back on track again in time. Peace!

 

Dave

I am sorry you have had to endure so much! It's quite incredible what a human body can endure and yet survive and live a somewhat normal life after! It blows me away! We are forunate as we have a new surgeon taking my husband's case that does minally invasive surgery! I have read quite a bit about it but like to hear from people who have experienced it and how they are doing today! I know alot of people come here scared, such as myself and love to here positive messages! Cancer is very scary, just the word! I know my husband will be so glad to take a bite of REAL food again! Previously he had a wonderful appetite, enjoyed my home cooking as well as dining out! That's one of the toughest parts! I constantly give him encouragement and remind him this is just temporary! Before he knows it, I will be putting my apron back on and making his favorite things! You certainly went through alot but I am glad you are doing better today! I always say, life is a gift, not a given! Be well!

Mtngirl7533

Dear Loretta

I am so thankful for your advice and sharing your experience! I am also so glad your husband is doing well and what a positive message you have given to me and others! 15 yrs, NED! Amazing! Also so glad to hear that with MIE he should be able to enjoy the foods he used to eat! My husband used to enjoy all sorts of food and loves my cooking! That has been one of the hardest things for him thus far! I give him constant encouragement and tell him of the wonderful stories you have told me as I think it is uplifting for him:) I remind him this is a temporary situation, we just have to get through it! The j tube feedings are going well and the dietician just increased the calories as well as the rate of feeding! She has also been a blessing! At times he can get down things like tomato soup or ice cream but other times nothing will go down! The doc said it is probably from the tumor making his esophagus inflammed! And of course the opening was so small when he was diagnosed in October that they couldn't even get the scope past his tumor with the endoscopy! I am grateful medical advances have come so far! I have an Uncle who has an incurable cancer who had stem cell and has been doing very well for over 6 yrs since the procedure! I am going to print the info you provided regarding the Herceptin as well! And I do want to continue to come back! Not only for the advice, help, information and the encouragement it gives me but to hopefully help someone else but what I have lived and learned! I will return asap! My prayers are with you and your husband always<3