Advice for esophagectomy recovery???
Posted , 6 users are following.
Hello. I'm 10 days away from an esophagectomy. I'm wondering if any of you who have been through this before have advice that might be useful during the recovery stage. I used the "ankle problems" area of these boards last year and received many extremely helpful tips there for the issue that I was having then.
As a bit of background, you can tell from my spelling that I'm in the US. I've had Barrett's esophagus for approximately 30 years, and what the doctors all believe to be Stage 1 cancer (adenocoarcinoma) was found during a routine endoscopy last month. I know that what is believed to be Stage 1 can be found to be Stage 2 during surgery, so I'm prepared for that. Assuming that Stage 1 is confirmed, I won't be undergoing chemo or radiation. I've had an endoscopy, high contrast CT scan, PET scan and endoscopic ultrasound so far. I don't smoke or drink and I never have. I'm in good health, except for the whole cancer thing. :-)
My doctor does robotically-assisted, minimally-invasive surgery, but he keeps a thorasic surgeon in the room in case the chest has to be opened unexpectedly. My expected hospital stay is 8 - 10 days.
Did any of you use a wedge pillow? Did it help? About how long did you have to eat only very soft foods? Can you eat "regular" food now? How bad is the reflux? How long before you could drive? Anything you wish that you'd known before the surgery? Were any of you diagnosed at Stage 1 and had the cancer return?
I'd really appreciate any information that you would be willing to share. I don't personally know anyone who has had this surgery.
0 likes, 11 replies
AlanJM becky7624
Posted
There is an organisation The Oesophageal Patients Association in the UK set up by David Kirby over 40 yeas ago. he is still alive and well, by the way, and it is mostly for patients who have had this surgery. There are factsheets and some useful booklets you can download like Life After Surgery. You will have to put up with the UK spelling of Oesophagus though!
In the UK the survival rate for Stage 1 is very good but I cannot remember the statistics. There is a surgical audit for a system called NOGCA (National OesophagoGastric cancer Audit) that might have more details but it can get very technical as it is for medical professionals.
?Your digestive system will be shortened by this surgery, and your new 'stomach' will be up in your chest. Recovery takes a long time, and you will have to eat 'little and often'. You may have an issue with 'dumping syndrome' as it is called in the UK, which basically means insulin spikes caused by less digested food going through your system and tricking it into releasing undue amounts of insulin. A lot of people do a wedge pillow - there is some discussion about then on HeathUnlocked, a UK-based internet site where there is an OPA community where you will find a wealth of advice as you go through. The OPA provide some pillows on a subsidised basis.
?We cannot put links on this site without them being bounced to the moderator, but if you have trouble finding stuff, you can always contact me direct.
becky7624 AlanJM
Posted
Thanks, Alan. I'll check about those resources. I had a Nissan's Fundoplication about 9 years ago so I already have to cut my food up as though I'm preparing it for a two-year-old.
Wojtek123 becky7624
Posted
I had this surgery 3 months ago, done laparoscopicaly. I also stayed 10 days in the hospital and went home with a food tube attached. I used the tube for a couple of weeks. And began to eat solid food after that. At first I ate mostly high calorie foods, then slowly introduced fiber foods into my diet. I tried a wedge pillow but kept sliding down off of it, since I move around when I sleep. Finally got an adjustable bed with an air adjustable mattress. This seems to work ok. the mattress allows me to sink in so I don't slide down flat. The reflux does not occur as long as I keep my head and throat somewhat elevated when I lie down. I had no restrictions on driving, I was at stage 4 with metastasis to the liver. I had 8 chemo sessions. The drugs administered were FOLFOX 5 and Herceptin. after 4 sessions the tumor shrank down to practically nothing. The liver tumor disappeared. This was why there was a decision to do surgery for a stage 4 cancer. My surgeon said the removed stomach and esophagus showed clear margins so there is an excellent probability the cancer is out. Time will tell. The biggest thing that helps me is i look upon this as a journey. I exercise every day and practice Tai Chi to keep in shape and stay active.
Good Luck with your surgery,
becky7624 Wojtek123
Posted
Thank you for your reply. I'm sorry that I'm just now seeing it.
I've been out of the hospital for 8 days. I'm not using the feeding tube and I admit that it's been difficult to get enough calories. Also, I'm torn because I need to lose weight (about 15 pounds) so it seems counter-productive to purposely regain the weight that I lost in the hospital (9 pounds) just to turn around and need to lose them again. But I am trying not to lose any more weight right now.
I got a 12 inch wedge pillow but it seems to make all my weight go right on my tailbone, and that's not comfortable. I can't afford a nice mattress like the one you got, but I will start looking at alternatives.
Are you back to eating whatever you want to eat yet? I know the portions and bite size will always need to be smaller, but I'm just wondering about food choices. Also, how long before you could swallow a pill without crushing it? I'm not sure if the progression from liquids to very soft foods to soft foods, etc. is because of issues with swallowing, or digesting. So far, I haven't really had any problems with anything I've eaten. Sometimes my belly hurts a little after I eat but I think that's because I still have staples, some kind of tubing designed to keep the staples from pulling out, and the feeding tube all still in my abdomen. The surgeon had hoped to do the surgery laproscopically, but he had to make about a 6 inch incision in my abdomen in order to undo a Nissan's fundoplication that I had done 9 years ago, and one of my lungs collapsed during surgery so a chest tube had to be inserted. At least my entire chest didn't have to be opened, so that was good.
I'm glad to hear that you are doing so well 3 months out from surgery. In the early stages of recovery it's sometimes hard to see the light at the end of the tunnel. I hope you continue to do well and live a long, cancer-free, life.
Wojtek123 becky7624
Posted
Hello Becky,
Yes I can eat whatever with the exception of sugary food. This causes the "dumping" everyone mentions, I get cramps, gas and pain if I eat candy, very sweet cake with icing, donuts etc. otherwise I'm good. I didn't have to crush my meds , just swallowed them whole. I think the food density progression is for swallowing.
I also had my right lung collapsed, on purpose so they could get to the top of the esophagus transthorsacially it was called. Had the chest tube for a while also.
I've read several comments about raising the head of the bed on blocks about 9 inches or so and that helping. Maybe you could try that.
Hang in there. it will get better as your system adjusts. Mine still is and will probably continue for a while. For me every day is new.
Best Regards
donald23202 Wojtek123
Edited
I recommend Mac apples or Empire if you dont like the tartness, I had my thoracic surgery in April of 2018 and it was a full chest opening and removal of the esophagus, relocating my stomach on top of my lungs. I spent a month in Mass General due to crashing two days after the surgery, having my spleen removed after bleeding out into my abdomen. I have dumping syndrom constantly and no solution now that almost three years have gone by. Hope all are doing well. The apples really do work and no elevation is necessary to sleep, probably the pectin but no one has checked this to my knowledge.
nancy54455 becky7624
Posted
I had my chest opened, ribs cracked, chest tubes, the whole thing. My Tumor was very small so you’d think they could use laxer or something but no, this surgery still in the 50’s. Not sure how I survived 6 weeks in hospital due to a leak. It’s 3 years and my ribs still hurt like hell.
Well, 4 months ago I had my left adrenal gland removed. My scans coming up in May, hope it’s clear this time.
My questions for you all. All of my scans and X-rays are clear but I have a very bad cough. It only happens when I bend over. My Oncologist seems to have no clue. It feels like my chest is irritated and something as simple as bending to pick up something brings on a coughing fit . Does anyone else have this?
Thanks and all the best to all ,
Nancy o
becky7624 nancy54455
Posted
Thank you for asking, Nancy. I'm now 12 weeks post-op and I'm doing quite well. I went back to work about 6 weeks ago, although I'd been working from home since I got out of the hospital. I'm very fortunate to have a nice person for a boss because the first 3 weeks back were rough and I ended up leaving early almost every day. I went through 4 weeks or so of severe nausea. I'm glad it didn't last longer than that.
My surgery wasn't totally laparoscopic, as we had hoped it would be, because the doctor ended up having to make a 4 or 5 inch incision in my abdomen in order to undo the Fundoplication. One of my lungs either collapsed during the surgery or it was collapsed by the doctor in order to do something. I think it was the former, but I'm not sure.
At this point I can eat pretty much anything I want, although the portions have to be small, of course. I never had a problem with dumping syndrome and I didn't have to use the feeding tube after I left the hospital so it was removed on my first post-op visit to the doctor. I've lost 25 pounds, but I needed to lose them so that's not an issue. All in all, my recovery has been quicker and smoother than what I was expecting. I know that I've been blessed in that.
I haven't experienced a cough like yours but I do start coughing when I wake up at night and my chest also hurts, almost like I have pneumonia or something similar. I'm not sure if this is because my lung collapsed or just one of the side effects of the surgery. Sometimes I cough just a little when I bend over but I think that is from acid aggravating my throat, or the part of my stomach that is in the place of my esophagus.
It's good to read that all your scans and x-rays are clear. I go for my first post-op CT scan in a couple of weeks. Fourteen lymph nodes were removed during the surgery and they were all clear so I haven't had chemo or radiation. The stage of the cancer was confirmed to be a 1b, but I'm still a little nervous about whether it will come back at some point.
I'm so sorry to read of your surgery/hospital ordeal. I had a friend who broke a rib and it also hurt for a few years, I think. I hope that you get relief from your pain and answers to your questions about the cough. Other than wondering if it's because of the acid, I don't have a clue there.
Keep us posted.
donald23202 becky7624
Posted
The coughing is from acid reaching the trachea during the night and again apples will keep acid in the stomach, Macs or Empire and eat at least two before bed.
alison94991 becky7624
Posted
donald23202 becky7624
Posted
Hi Becky if you are having reflux during the night try Macintosh apples or Empire apples, two will do all night. This helps if elevating ones head during sleep doesn't seem to help.