38 Days post Esophagectomy

Posted by beckydm @beckydm, Dec 15, 2023

Well my husband had his Esophagectomy on November 8th. We are currently in the hospital still trying to get through multiple complications. He had stage 4, localized cancer that only spread to one lymph node.
He has been in the ICU twice due to aspiration of fluid that leaked from the surgery from his stomach into his lungs.
On top of this, dealing with two pinhole leaks in his esophagus. They are trying stents so the leaks can repair, but it seems to be taking forever and causing him so many problems. What started off as a positive strong mindset is now just pure exhaustion and second guessing this surgery. He has one leak left that just won’t heal, and had to get a new stent put in 2 days ago, and now has a fever of 39.5 (sorry we are Canadian lol)
We will be here for Christmas and wish we could be home with our kids, as we had to come to another city for thoracic surgeons.
He has not eaten in this whole time, no feeding tube was inserted ever, they have him being fed through IV but managed to lose 15 pounds this month.
I’m hoping this WILL get better 🙁

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Thank you for the update. I am sure I am only one of many that are sincerely hoping your husband gets well soon. I hope you can find a way to enjoy Christmas this year and for many years to come.

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I'll send some prayers your way.

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I've seen this in a few that I've counseled. Exactly why this happens... I wish I could say. If during an esophagectomy, I can only lay the blame at the feet of the thoracic surgeon... are these leaks at the anastomosis? But then again, there are just so many variables. The age of the patient, the condition of the patient, the friability of their esophageal tissue, the thickness of it, which method of esophagectomy was used... and why, etc. Yes... I've seen some in the hospital for many months. The post-op journey just sucks even when things go well... and the start of his journey (back towards proper eating, his body learning to digest food once again, proper intestinal function and pooping half decently... won't begin until he has healed these perforations.

I'll be honest, there aren't any experts in fixing these leaks. And fistula development is possible... which really complicates things.

Have they tried VAC closure using the sponges? I believe VAC is Vacuum Assisted Closure. I saw this used in Southern California but the patient was transferred to a separate hospital (from where her esophagectomy was performed, to one up in Los Angeles where this specialist performed this procedure (Keck hospital). Too bad a J tube was not installed during the esophagectomy... but I know this is rarely done outside the United States (either neoadjuvantly or adjuvantly). And I'm not quite sure why... but your husband could sure use this method now. IV feeding is no way to go long term... and this could be going on for months! Even with the stent(s) in place... I believe swallowing anything just doesn't help the situation. I'll assume he is NPO for now. So he has not even taken his first step on the true post-op journey. So frustrating I know. Hang tough... many prayers for you both. Maybe ask about a J tube asap!

Gary

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Hi @beckydm, this must be so scary for you. I can imagine that your husband positive mindset is slowly being eroded. How are things today?

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So he is getting a feeding tube now into his bowel tomorrow. Also the surgeon is going in to see “what it looks like in there” and will proceed from there. The stent isn’t doing what they were hoping it would do. VAC was never brought up, and I have never heard of it before. I just feel like I’m not understanding anything and I don’t know the appropriate questions to ask.
When I asked the surgeon what happens if it won’t heal, his response was they might have to go in and reconstruct.

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@beckydm

So he is getting a feeding tube now into his bowel tomorrow. Also the surgeon is going in to see “what it looks like in there” and will proceed from there. The stent isn’t doing what they were hoping it would do. VAC was never brought up, and I have never heard of it before. I just feel like I’m not understanding anything and I don’t know the appropriate questions to ask.
When I asked the surgeon what happens if it won’t heal, his response was they might have to go in and reconstruct.

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Ok Becky... I have a few comments about the situation you two find yourselves in, and we can talk privately as well, or you may drop in on our free Zoom calls we host twice weekly (not official Mayo Zoom calls hosted by doctors, but these are calls run by EC patients and caregivers for other EC patients and caregivers... believe me... we know a lot!)

Anyway, having talked to many Canadians about their care, I'm used to how things tend to work in Canada. In fact two of our counselors on our Zoom calls are from Canada.

So... stage 4... and still went to surgery. Yes... unusual. I'm not saying good or bad, just unusual. If only a local lymph node (to the solid esophageal tumor) I would not call that stage 4 necessarily. So... debatable. But I am happy a J tube is going in. So take it seriously... adapting to and using this tool is important. To not only gain weight and stay healthy, but to heal up his esophageal perforations. This is priority #1 for your husband (after his new method for feeding and hydrating himself). If his "esophagus" is not repaired and fully functional... he's going nowhere fast. And how this is to be accomplished is anyone's guess... even the most skilled surgeon and GI doctors are often at a loss. The first try is always a stent... hopefully it heals. But from what I've seen, eating and drinking while this healing process is taking place... doesn't help. That's why the j tube is needed... which is nasty to subject the patient to because he just came out of a nasty esophagectomy surgery!! And his true post-op journey back towards digestion and a normal life... is on hold... until these perforations are repaired and his esophagus is ready to go.

I will come privately to chat... and help you come on our Zoom calls if you so choose.

Hang tough,

Gary
Southern California

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@mrgvw

Ok Becky... I have a few comments about the situation you two find yourselves in, and we can talk privately as well, or you may drop in on our free Zoom calls we host twice weekly (not official Mayo Zoom calls hosted by doctors, but these are calls run by EC patients and caregivers for other EC patients and caregivers... believe me... we know a lot!)

Anyway, having talked to many Canadians about their care, I'm used to how things tend to work in Canada. In fact two of our counselors on our Zoom calls are from Canada.

So... stage 4... and still went to surgery. Yes... unusual. I'm not saying good or bad, just unusual. If only a local lymph node (to the solid esophageal tumor) I would not call that stage 4 necessarily. So... debatable. But I am happy a J tube is going in. So take it seriously... adapting to and using this tool is important. To not only gain weight and stay healthy, but to heal up his esophageal perforations. This is priority #1 for your husband (after his new method for feeding and hydrating himself). If his "esophagus" is not repaired and fully functional... he's going nowhere fast. And how this is to be accomplished is anyone's guess... even the most skilled surgeon and GI doctors are often at a loss. The first try is always a stent... hopefully it heals. But from what I've seen, eating and drinking while this healing process is taking place... doesn't help. That's why the j tube is needed... which is nasty to subject the patient to because he just came out of a nasty esophagectomy surgery!! And his true post-op journey back towards digestion and a normal life... is on hold... until these perforations are repaired and his esophagus is ready to go.

I will come privately to chat... and help you come on our Zoom calls if you so choose.

Hang tough,

Gary
Southern California

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Yes please I would love to chat, or do the zoom. Whichever you think is best.
Thank you

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@beckydm

Yes please I would love to chat, or do the zoom. Whichever you think is best.
Thank you

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Here's my FB profile pic... if you want to video message that way... I use this with many all over the world... Kenya, Australia, Canada, India, the UK, etc. Easy peasy... and free. Find me and send me a pm.

I also gave you the Zoom call codes and my personal cell in a pm to you.

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As a nurse and a wife of a husband that had stage three esophageal cancer, and a very successful surgery at UCLA, demand a feeding tube. He needs to have a jejunostomy tube placed immediately for tube feeding. He needs to nutrition and protein in order to heal. He’s losing all of that at this time. But make sure it’s a good GI surgeon that knows how to place that tube. There’s a small learning curve for how to feed yourself and give medication through the tube but my husband did it just fine. Don’t let them talk you out of it because of infection risks because right now he’s already got that going on and he needs the nutrition. My husband was on two feeding for most of the summer during the chemo and radiation. He had a G-tube at that time. During his esophagectomy, they replaced it with the Jejunostomy tube. This surgery definitely has its risks of weeks and we were so grateful but my husband‘s surgery did not have the complications. But we anticipated the potential. I am so sorry that you guys are going through this. I pray that the Lord will heal those leaks and give him the strength every day to get better. A dear friend of ours, head throat and upper esophageal cancer, stage four, two years ago and he battled the complications for over a year. However, he has pulled through miraculously now, and is eating well and doing great. But it sure was a rough go of it because he had Covid when it first came out and subsequent complications. I pray that you will get through this as well, and not struggle as long as he did. advocate for yourselves for the tube feeding, and may the Lord give you hope and wisdom for your next step every day.
Patti

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I had an esophagectomy on 9/1/20 (my birthday). Leaks caused me problems, too, including depression, but my surgeon, Shanda Blackmon, diagnosed the issue quickly and fixed it. I also had a stent inserted to allow the esophagus to heal. I thought I was a goner but 4 years later I am healthier than I have ever been. Do not get frustrated and give up. There is life after esphagetcomy and Mayo is absolutely the best place to have that surgery.

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