Living life after treatment and surgery for Esophageal Cancer.

Hello everyone,
I had Ivor-Lewis surgery for stage 3 esophageal cancer 9 years ago at the Moffitt Cancer Center in Florida. I’m a survivor. So I thought my post-surgery experience might be helpful to everyone.

- I had six weeks of chemo and radiation treatment before my Ivor-Lewis surgery
- After surgery, my stomach wasn’t digesting food— so I stayed on a feeding tube for 4 months.
- I then got off the feeding tube and drank Boost (or Ensure) for several months- no other food.
- I went to the Mayo Clinic in Jacksonville and they put me in Reglan for one week and off one week and then on one week and so on… After one month my stomach began working and was digesting food again. So, I got off the Reglan and was eating normal food.
- I was then diagnosed with thyroid cancer (Papillary). They had to remove half of my thyroid. I’m convinced that the radiation treatment caused this cancer.
- I have no sphincter- so I sleep on a 30 to 45 degree angle
- my permanent weight is 20 pounds less than pre-surgery weight.
- if I eat too much— I vomit and gag
- I take Pantoprazole 40 mg twice a day for acid reflux due to no sphincter
- I get a tickle in my throat constantly- which forces me to cough a great deal- I suck on throat lozenges a lot to alleviate the symptoms and also drink carbonated beverages like Sprite or coke or even beer to ease the tickle.
- my stomach has a difficult time digesting certain foods- For example, I no longer eat salads- lettuce stays in my stomach for long periods of time. I love Italian food- but tomato sauce is tough on my system. And I no longer eat red meat; especially steak. I find turkey burgers are easier on my digestive system than beef burgers.
- I continue to have swallowing issues- the opening (where they connected the esophagus and stomach) narrows over time— so I get an endoscopy every year with dilation (it widens the opening).

In summary: my altered anatomy has changed the quality of my life and I had a difficult time coping, especially the first year. I eventually learned how to maintain a positive mindset and wrote a book about it: The Power of Positive Aging. If any of you are having a difficult time adjusting to your new life- I recommend reading my book— it’s about my esophageal cancer journey. To cope with my new life I practice what I call the four A’s:
Accept; Adjust; Appreciate; and have the right Attitude.

I’ve been through it all and I’m still here — appreciating what life has to offer. If any of you have additional questions or seek guidance on your new journey- please reach out to me.
David

That’s great news David that you have survived ESC for 9 years. I started my journey last August 2024 went through flot program so 4 chemo treatments every other week for 2 months then waited 5 weeks then had Ivory Lewis surgery that’s robotics surgery. No big incisions I had two surgeons one for the front and one for my right side. 9 hr surgery. Recovery for me was actually pretty good. 8 days in hospital. Then waited 4 weeks had 4 more chemo treatments same way every other week for 2 months. Had my pet scan in July everything clear. I do eat small meals more often but can eat most foods. Digestive system is getting better every day. I credit that to being active walking is big for me also use lite free weights trying to get some muscle back. Like you said a positive attitude is everything. I’m 62 and I’ll be 63 soon. I’m grateful for everyone that has helped me along the way. And grateful for everyday I’m here. My oncologist and surgeons and nurses were the best can’t thank them enough. My wife and sons and all my family were there for me. They are making more and more progress in this area of ESC. Scott

That is wonderful news. Sounds like your surgery + chemo treatment was successful. But more importantly, your post-surgery has gone well. You are eating small meals and have no problems with digestion. But know that your journey is just beginning. Absent a sphincter, you will experience acid reflux and possibly bile from time to time. My mistake was trying to eat normal sized meals. That led to some gagging, vomiting and acid reflux issues. Small meals is the best prescription for our altered anatomy. Best of luck and stay positive!

Congratulations you seem to be doing so well. My surgery is pending till the first chemo round is over. I would love some helpful tips and truths post surgery that helped your recovery. Sleeping situation best dietary advice worst and best of recovery. Thanks

Zoom call in 45 minutes... 9am Eastern.

Gary

Sorry I’m on the west coast.

Hello, Scott here post surgery is different for all of us. So first I had ivory Lewis surgery that’s robotic surgery. Two surgeons 9 hr surgery I was in ICU 1 day 8 days in hospital altogether. Recovery for me was pretty good first couple days sore hardest part chest tube coming out my right side. Because they deflated my right lung to do surgery. So chest tube is to make sure lung clears out fluid. Next is to get up and walk helps with clearing out lungs also then breathing exercises the more you do the faster the recovery. Put the work in it’s worth it. 7 days later I had my swallow test to make sure no leaks. A ok that day I also got my chest tube out great day. Two days later I went home. So I was on a soft food diet for a couple weeks. Worked my way up to other foods. It’s been 8 months post surgery. I can eat most foods pretty well. Biggest thing is still small meals more often I get full fast. Take walks everyday also work out. About sleeping I don’t have acid reflux personally I don’t have to sleep at a 30 degree angle. Some of us do some use wedge pillows. I do recommend not eating 2 hours before bed. At least that works for me. All through this my attitude was I got this also my support team was awesome. That includes my oncologist my surgeons and nurses they were awesome. And of course my family my wife and sons and my brother and sisters and in-laws everyone was great. Hopefully you have a great support system also. If you have any other questions feel free to ask ok. Wishing you the best!! Scott

Congratulations Scott and thank you for the positive outlook. Much appreciated.

Thx Scott. Good for you. Keep it up. My guy has the colon used and was doing well till 2 months out. Short story, he probably needs dilation or a stent...has a stricture at the distal connection. At least we know this should help get him back on track.
Meg

I live in Southern California... I make all Zoom calls to help my fellow patients and caregivers. But I'm returning from Athens tomorrow... so I'll miss Wednesday's call. Be back Sunday... 6am on Zoom.

Gary