What Should We Expect?

jannehughes

Hello, everyone! 

My father was diagnosed with stage 3b esophageal adenocarcinoma of the GE junction in May of this year.  He has had 28 radiation treatments and 5 rounds of carboplatin/paclitaxol, and just had an Ivor Lewis esophagectomy with gastric pull-up yesterday.  He did so well with his neoadjuvant treatments, but he is in excruciating pain since surgery yesterday.  I realize that pain is very normal after a 5 hour long invasive procedure, but I know he is very worried.  Would anyone be able to reassure us that this is normal, and perhaps share your experience with esophagectomies?  Also, I know that the healing time and recovery are different for each person, but could you tell me about yours and how long it took to start feeling normal (ish) again?  I find that he has so much more success with this when he has a better understanding of what to expect.  He is also very receptive to hearing it from people who have been there and done that. 

This has been a crazy ride for our family, but I am so proud of my dad and he continues to amaze me each and every day.  Thank you for your help and support! 

Julie

paul61

Your Dad should not be in pain

Julie,

 I am so glad that your Dad came through the surgery well. I had my esophagectomy about 7 and a half years ago; but I remember my first day after surgery was difficult.

 I had a tube down my nose, two tubes in my chest, a tube in my abdomen, two IVs in my arm, and a tube so I did not have to get out of bed to urinate.

I felt like I had been hit by a Mack truck and every time I moved something hurt. But, although I was in some pain, I would not describe my pain as “excruciating”. I would say on a scale of 1 to 10 my pain the first few days was a 3 when I was lying still and a 7 when I moved around. The first few days I had a spinal epidural that managed my pain very well. After about three days they removed the epidural and gave me a pain management pump that delivered pain medication when I pushed the button.

This is a highly invasive surgery, and with all surgeries of this type there is some discomfort in recovery, but I have to say that my pain was very well managed while I was in the hospital. If your Dad is having pain I would discuss this with his nursing staff and doctors because he should not have to suffer while he is recovering. Everyone reacts differently to pain and some pain medications so it may take some time for his support team to get his medications regulated so that he is comfortable without being sedated.

My first three days after surgery were in ICU and they are a bit fuzzy because I was on some fairly strong pain medication. They got me out of bed on the first day for a short time but just moving around was a challenge because of all the tubes that had to be managed every time I changed positions.

After three days they moved me to a regular room in the thoracic surgery ward, and I started short walks around the ward. Each day I made a few more laps around the floor. I had some issues with elevated heart rate (fairly common with this kind of surgery) so they kept a very close eye on me and gave me some medication to slow down my heart rate. I could have nothing to eat or drink for five days. All my nutrition came via IV. After five days I had a x-ray swallow test using contrast to check for leaks in my anastomosis (the area where what was left of my esophagus was attached to the remainder of my stomach). Once they were satisfied that there were no leaks, I started on a liquid diet, then proceeded to a soft food diet, and then to a normal diet just prior to my release from the hospital.

I was in the hospital for twelve days. I was there an extra two days because I contracted an infection in two of my surgical incisions so they had to place my on IV antibiotics until the infection cleared. I had a feeding tube called a “j-tube” to help me get enough calories while I learned how to eat very small and frequent meals. Once I got used to my new digestive system I had the feeding tube removed.

This is MAJOR surgery and recovery takes time. My energy level and activity level were very low for the first months after I returned from the hospital. Just getting up and shaving and brushing my teeth made me tired and short of breath the first few days I was home. Things improve gradually, but they do improve. Your Dad will need lots of physical and mental support for the first few months.

The important thing is the cancer has been removed and your Dad is in recovery. He will be getting the pathology results in a few days. I am hoping he gets clear margins and clear lymph nodes.

Then he can focus on recovery.

Let me know if there is anything else I can help with.

Most importantly, your Dad should not be in pain. If he is they should change his pain management approach.

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

 

 

LorettaMarshall

Julie~There R success stories here~Dad's pain will subside soon!

Hello Julie ~ Because others will be answering you on this link, I decided that I would post my answer on a separate topic line because of its "length".  So see my answer to you about what Dad can expect at this link:  https://csn.cancer.org/node/311333

Loretta (Wife of an EC Stage III (T3N1M0) survivor who is still alive and doing well. 

Deathorglory

It Gets Better

Hello Julie,

I started out the same as your father.  I was stage III, had chemo/radiation, then surgery.  My path through & after surgery was probably (hopefully) not like your dad's.  I started out with the laproscopic version of the esophajectomy, but they ran into scar tissue from a previous surgery and needed to do an open surgery.  It turned into a 9+ hour affair with two surgeons.  My recovery was more involved than was hoped.  I also got pneumonia (tell your dad to use his "hug pillow" a lot more than he wants)  which also made my recovery more complicated and painful.  It took me two months to be able to go back to work.  I don't know if he'll be receiving post surgery chemo.  There are two reasons for it.  One, is b/c they're not sure that they got everything with the surgery (or they're sure they didn't get it all) and the other is to be very aggressive in trying to make sure they got it all.  I got post surgery chemo, which was the same, but much stronger than what I got pre surgery.  We were being aggressive and bayonetting the corpses on the battlefield.  

Some of the things your father can expect to deal with are dietary changes.  Both in how much he can eat and what foods he can eat.  This is a trial and error process.  He'll figure out what foods cause problems and exactly how much is too much.  Also, b/c there's no longer a valve to keep food & acids in the stomach, he'll have to sleep in an elevated fashion.  Sleeping too flat will lead to reflux.  Also, if he likes to sleep on his stomach, that probably won't work anymore with an elevated sleeping position (it bends you backwards).  

As far as the pain goes, I had a worse than hoped for recovery, so I was in a lot of pain.  My doctor gave me a ton of stuff for it and I managed ok.  There are some blurry times from being a bit drug addled, but I don't think I was missing much other than pain. If your dadcontinues to struggle with pain, be sure to talk to the doctors.  There's no reason for the pain to be excessive.  There are professionals who get paid to deal with that. 

There's good news also.  With time (not as quick as you want, though) everything does get better.  Your dad will figure out the diet that works best for him and that causes him the fewest negative effects.  He'll slowly regain strength and some weight.  He'll eventually get back to his regular activities (again, not as quickly as he may like).  It took me 8 years, but I eventually regained ALL of my pre cancer weight.  I actually weigh a few pound more than I did pre cancer.  It took me years, but I am now able to eat and drink whatever I want in whatever quantities I want (a very big deal for EC folks).  

Even though the journey was largely unpleasant, I'd do it all over again if I had to.  Hopefully, your father comes out the other side and feels the same way.

Best wishes to you guys,

Ed

jthomas233

Pain is the rule and not the exceptiom

I had a 16 hour MIE, developed a leak and had a 7 hour open surgical repair during my one month hospital stay.  The pain was one of the biggest problems for me.  Tell your dad to tell the medical personnel when he is in pain and they should do what they can to improve things.  This is no time to be tough.  Ask for the pain meds and deal with the fallout later.  For my part, I took about 12 percocets a day and two oxycontin, and some dilaudid poat surgery...and I was still in terrible pain.  Fast forward 6 years and I take aleve and omeprozol.  Get help with the pain.  You have enough to worry about.