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Esophageal Cancer - 14 Months Post Op Follow Up - Good News
Arby1
10 Posts

I had an esophagectomy on March 15, 2021 as the final step in treating an adenocarcinoma on my distal esophagus. This was preceded by 5 weeks of chemo and radiation. I recently had a CT scan followed by a Zoom visit with one of the surgeons and am happy to report that things are about as good as they can possibly be. We'll have another scan and follow up visit in 6 months time.

Recovery after surgery progressed very well until I contracted shingles about 2 months in. The next 4 months or so were difficult but things finally turned around in November and since then life has been pretty good. Eating is a bit trickier than it used to be. Swallowing is never much of a problem but I've had to learn to watch portion size and timing to avoid “dumping syndrome”. Breakfast is often a bit challenging. A half hour lie down usually fixes things.

I'm posting this to share the news that if you are selected for this treatment, you can survive and have a good life. I'd also like to reiterate my gratitude to the medical professionals that have made all of this possible and to this site for allowing us all to share and learn.

@Arby1

8 Replies

@Arby1 thank you so much for sharing. It is so uplifting to hear from others on the other side of treatment.

I would like to introduce you to @Lary's who has had a similar procedure.

Lary's
7 Posts

Hi, @Arby1 its @Lary's here glad to hear that you are getting along and that your recovery is in progress and that you are adapting to what your esophagus is able to adapt to with eating.

I know that for myself with having a total Laryngectomy swallowing is a big deal and in the beginning, it was a major thing to deal with. My surgery was 3 ½ years ago and I have o be careful how I eat. It now takes me about 1 hour to eat a meal, I must put smaller amounts in my mouth, chew until it is literally ground up, then swallow and as well chase it down with a small amount of liquid. After any meal it takes about ½ hour for my esophagus to settle down. But all in all, I do not do too bad. You mentioned laying down for a ½ hour. For me, I find that sitting up and quiet, I let gravity take over, plus. a few large swallows as well. For me, during this time it feels like food is still there but I have been told that is the sensation I feel due to the narrowing of my esophagus due to the surgery.

Sounds like you are doing OK and hopefully you will continue on getting even better. If there is anything you want to know please contact me as I am open to discussion over this topic.

Have a great day and stay safe.

@Lary's

HW123
7 Posts

Hi Arby

Glad to hear that things are progressing well.

I had my Ivor Lewis esophagectomy on Nov. 12, 2012. As I've said to others before, life changes as a result of the surgery, but it's not horrible - just different and something new. You're right about portions and timing of meals. I leave breakfast as long as I can (which is wrong!) because I never know how I'll feel afterward. “Dumping Syndrome” seems to be a way of life for me. Even after nine and a half years, I still try to have one more bite. Fortunately, I live by myself and am retired, so laying down for an hour doesn't mess up anybody else's schedule. Going to a restaurant doesn't work - I hate to just sit there and be a spectator.

I may have communicated with you before. If so, I probably told you that, as a result of the surgery, I don't have any appetite. I know when I'm hungry, but don't feel hungry. That doesn't make sense to anybody but it's the only description I have! But it makes things easy if i have to fast prior to a gastroscopy!

In addition, I have absolutely no sensation of thirst. I keep a bottle of water with me, but still have to remember to have a drink.

I'm only droning on here just to say that I've adjusted to this new way of life as much as I can. And it sounds like you're well on your way to the same conclusion. Good luck.

Howard

Hi @Arby1

Congratulations on the results of your one year scan - a very significant milestone! And for sharing your recovery experience and your very hopeful message that it is possible to have a successful outcome and recovery. You certainly didn't need the extra challenge of having shingles in the midst of trying to recover from an esophagectomy which is difficult enough on its own!

I agree, learning what works in terms of eating takes time and experimentation - I have found that avoiding sugar / sweet food helps (ie no sweet buns / desserts); also, not eating until later in the morning when my system has woken up and in general, learning not to take one more bite. I have found that at times I get tired after eating, which I attribute to changes in how foods are now processed in my re-engineered digestive system. On a positive note, almost 3 years post-surgery I can eat most foods - 3 smaller meals with a couple of snacks and enjoy a glass of wine or a pint (slowly!).

Again, thank you for sharing your great news and hopeful message.

Hi @HW123

You likely are aware of this, but one of the things I discovered in researching Ivor Lewis esohpagectomy is that the vagus nerve is severed during the surgery. One of the functions of the vagus nerve (among many) includes signaling hunger and satiation signals between the the brain and gut, which helps explains why those of us with esophagectomies tend not to feel hungry. In my first year of recovery, I basically ate because I knew I was supposed to / had to in order to recover, not because I was hungry. I still need to remind myself to drink more fluids and increase hydration.

<<HW123: . . .If so, I probably told you that, as a result of the surgery, I don't have any appetite. I know when I'm hungry, but don't feel hungry. That doesn't make sense to anybody but it's the only description I have! >>

Sip0727
6 Posts

Hello Arby1,

I too had an esophagectomy on March 25, 2021. Mine was squamous cell carcinoma. Between cancer treatment (5 weeks chemo and radiation) and surgery i came down with c-dificile. I think when your body is fighting a dread enemy, you are more likely to get another dreaded ailment (shingles too).

I was fortunate as well with the one year CT with a NED. No Evidence of disease. All the bad statistics that you read on google pertaining to esophageal cancer are outdated. I am happy to hear of your success as well as the others that commented. It gives a lot of reassurance that a success story is possible.

I had my treatment in London Ontario, as well as the surgery. Great doctors. I was stage 3, the tumour was 9 centimetres, 11 lymph nodes were taken which were all clear. I was on a feeding tube for 6 months, prior to my surgery. Although I was very thin at diagnosis time, the feeding tube managed to keep me well nurished. I had nothing by mouth, not even sips of water. It was a learning curve to introduce real food . Today I can eat most everything. Of course not a huge meal. My weight is slowly coming back. I do not eat anything past 8 pm. Also invested in a adjustable bed to have the elevation needed to keep things down.

I have had an issue with Thrush since before treatments and surgery. Seems it comes and goes and never completely leaves. But it is manageable.

I am a 67 year old retired female. Wife, mother, and grandmother. Life is good, still have scanxiety, but don't we all!

Lary's
7 Posts

Hi @Arby1 That is fantastic news for sure. Your Post Op progress is something to be proud of. I am 3 ½ years out from my Laryngectomy and had the pleasure of a TEP as well. I have found that as each year goes by things will get better & better. You know the body has experienced a dramatic change and the brain and body now have to adjust and get back in sync. The messages to the brain knew something had gone wrong but it's just like sending out that “Hydro-Line Repair Person” to get the connection adjusted and back to speed. As for that eating, I am sure that with time it will also get better I still have some issues but I am slowly experiencing improvements. GREAT NEWS I am very happy for you. Visit me @Lary's Have a great day.

Arby1
10 Posts

Hi @HW123

Thanks for your comments. It's interesting how our systems work and how they differ. I never get “hunger pangs” anymore but I'm still eager to eat and drink. I'm trying to improve my mornings by starting the day with more protein and less simple carbs. Unfortunately I'm a bit of a glutton so I'm trying to improve my discipline. Happily, I can currently afford to add a couple pounds.

Harvey

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