Living life after treatment and surgery for Esophageal Cancer.

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

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, thanks Gary. Geoff

Our twice-weekly EC Zoom calls are as follows:
In America,
Wednesdays, 3pm for me in California, which is Thursday 8am for you in Tasmania.

And Sundays, 6am for me in California, which is Sunday 11pm for Tasmania.

Tasmania may move their clocks at different times than we do in America... so adjust for that when those Daylight Savings days happen. Here's the link:
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Gary

Hi Gary, I tried to attend the Zoom meeting Wednesday 8am EST Australia but could not find the link yo sent me - IT not my strong suit. Could you please resend the link and EC meeting times. Thanks Geoff (from Tasmania)

Hello from Tasmania, I fully agree with Gary’s comments above. I’m 15 months post surgery - the first few months were pretty tough - sometimes it felt like I would never recover. Slow, progressive improvement followed from there. It really took 12 months to recover fully or more accurately to a stable new norm. To tell you the truth, I’m very grateful to be around to suffer the relatively minor inconveniences that the surgery now entails. It sounds as though your husband has had a particularly bad run of complications and I’m sorry to hear that that has been the case. Age, weight and fitness are no doubt factors in tolerating the surgery. Not much you can do about age, but the other two are within everyone’s control - fitness / exercise and a healthy lifestyle really do help. Getting the renewed perspective and mindset Gary suggested might be very helpful to you both. Best of luck with your recovery. Geoff

10 weeks is just barely getting started on the post-op journey... so what is needed is a new mindset. It takes a year (minimum) to two years post-op to get somewhat back to normal. My second year post-op was waaaayyy better than my first year! Hang tough... come see us on our Zoom calls if you have questions... starting in 5 minutes or so (9am Eastern) today... Sunday.

Gary

Same!!!! I'm struggling with being very angry with the surgeon for not giving us any real idea of just how horrendous the surgery and recovery are. My husband had Ivor Lewis about 10 weeks ago. You name it, he had the complication. I think knowing how grueling and life altering this surgery would be would have at least opened up the discussion of if it was worth the risk. My husband is currently in the hospital again with pneumonia. He also has an incessant dry cough since his stents (for 3 leaks) were removed 2+ weeks ago, which we're getting discouraged by this because no one know what is causing the cough and if it will go away. Every step forward includes 3 backwards. I wonder if he'll survive this surgery at the end of the day. I'm struggling with being positive and being realistic. Life is very hard right now.

Here's the one-touch Zoom link if you'd like to join us and just listen or ask away... we're just EC patients and caregivers tending to each other... we know a lot! Our 6pm Eastern calls on Wednesdays would be 8am Thursdays in Brisbane, or 6am in Perth. Look forward to meeting you and discussing reflux control... which we do discuss quite often.
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09

Hi Gary, Thanks for your input and invitation. I’ll look into your suggestions and discuss with my GP as scripts will be required. It sounds like ongoing high ppi doses are not uncommon. Regards Geoff