Living life after treatment and surgery for Esophageal Cancer.

Hello from Australia, Good to read your comments as above. I’m 14 months post surgery and have been able to gain 6 kilos (13 lbs) after losing 16 kilos (35lbs) in total by the time I was able to recommence a normal diet. Appetite is different, perhaps because gastric stretch receptor function has changed. This also means you have little or no idea when you’ve eaten enough. You quickly get to trust your visual assessment of manageable portion size. After 12 months, I started getting quite severe reflux and started taking Esomeprazole (PPI) - the dose required to control reflux is 60mg which is quite high. My surgeon has said that the reflux has to be controlled as it may cause a new bout of esophageal cancer. He also said that gastric tissue usually stops producing acid for 12 months or so after surgery. Has anyone else had problems with reflux and if so, how are you managing it? Some foods now need to be avoided or eaten in very small quantities - fatty / oily foods being the worse.

Many of us do a few different things. And we have a few Aussies and Kiwis here and there who pop on our twice-weekly free Zoom calls.... next call is Sunday at 6am for me in California... which is 11pm Sunday evening in Brisbane... and 9pm Sunday evening in Perth.

Anyway... some of us switch PPIs to Omeprazole... or Pantoprazole... as maybe these work better. Some of us switch up the dosages by taking one 40mg pill in the morning... some take two 40s a day... one in the morning and one before dinner or a bedtime. Some switch to taking two 20s a day instead of 40s. Some also take Gaviscon Advance before bedtime to quell the acid in their tummies.

And oddly enough... we have some that go against convention and don't follow the rule of NOT eating within 2 or 3 hours of bedtime. Instead they do the opposite and eat a bunch at bedtime.... maybe a sandwich or bagel or whatever... it fills their new stomaphagus and basically acts like a seal... keeping the acid and bile in their tummies so it can't come up towards their windpipe (trachea). If you come on our Zoom calls you can talk to these folks.

Gary

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

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.

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

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

That’s great, thanks Gary. Geoff

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!