Looking for others' experiences with Esophageal Cancer treatments

Yeah, I'm not doing surgery, being gutted like a fish, not being able to strain my right side, scar tissue issues,... Would wind up in a nursing home. Hemiplegia is not the same as able bodied and able bodied people can't understand it.

Oh... so sorry. Maybe I misread your post... or read someone else's post altogether and replied to the wrong person... as I was thinking you were making your way to surgery. But all the best to you! Sorry bout that.

No Gary, you didn't misread this post. I am the author and have my surgery Tuesday. These feeds have a tendency of becoming convoluted over time as folks forget the original question and run off on tangents. I do have your phone number and plan on reaching out to you at some point. I am having it done at Mayo Phoenix and trust my team implicitly. I know it's going to be a difficult journey but I am a tough old bird with good health and a positive attitude, to say nothing of my 5 children and 6 grandkids to keep me motivated. I have read several of your posts and you've already helped me. I'll be in touch. Thanks.

Glad you're doing better. What types of food can you eat after an esophagus removal . And was it taking your stomach and making part of it a substitute esophagus or something else ?

We all make the post-op journey a bit differently. First off, does tumor type and location matter... yeah... a bit. But regardless of size and shape and location... they tend to remove quite a bit of your esophagus. It isn't like they cut 2 inches off one guy, and 12 inches off another. They tend to go a safe margin above the esophaheal solid tumor to ensure clear margins. And as one surgeon explained to me... doesn't really matter, functionally, if they leave 20% of your original esophagus vs 40%... you won't know the difference. The stomach is big... has its own blood supply, is nearby, and easily stretches up enough thru the diaphragm to be connected to what's left of the esophagus. And they always cut of a top portion of the stomach... to mate up and connect to the esophagus. Other than my somewhat smaller stomach capacity... I really don't notice the difference when eating and swallowing (today).

Now... I surely can't compare my first 6 months post-op to the last 30 months. There are many unknowns when starting on the post-op journey. What food and drink will bother my tummy? What quantities? How bout spiciness... red sauces? Sweets? Meats? Temperatures? Alcohol? And how tight will my new throat be? It's all over the place folks... I know many who never need a single stretch post-op... and I know some who've had over 20 stretches. I'll add more later... for those who are interested...

Gary

Thanks for the info. I can't risk it . And with my feeding tube and cancer there are numerous things I don't consume: sugar must be low ,no alcohol, no thick liquids unless I water them down, no spicy, no acidics, low sodium.. it's trial and error at times. I try to make it fun though by shopping and experiments. Blessings

No bigger suckfest than having to be in the hospital for surgeries. Had 4 in a week plus, monh plus of recovery and rehab, staples stiches, scar tissue...

I'll add a bit more. I went on my EC journey completely stupid (let's say uninformed). I stayed completely off the internet... never consulted Dr. Google, not even once. But I think my wife did... and I didn't want to hear any of it. Why did I not research a thing? Probably 3 reasons (in hindsight). 1 - I didn't want to know, I knew cancer was worse than a sprained ankle. 2 - I was lazy. And I didn't want to read a bunch about cancer, figuring out what applies and what doesn't (even though I'm a chemical engineer). 3 - my doctors kept me busy, diagnosis, quickly a J tube, then in 3 weeks, CROSS protocol underway, then 2 months off, esophagectomy, 2 months off, year of immunotherapy. And never any negative talk... I never heard, "stage 3, big ass golf ball tumor in there... ya got maybe 12 months Gary!" My doctors simply said we're giving you chemo and radiation, will scan to confirm all is as it should be, then we'll cut it out. Then we'll monitor you. No talk of immunotherapy upon diagnosis... didn't hear of it until I was told it was starting at 2 months post-op.

So... my ignorance served me well. Why? I feared nothing because I knew nothing... had no clue maybe 50/50 I'd be here in a year... and I'm in a group where only 20% of us will see 5 years (I learned this at 6 months post-op). Also... I had no expectations. Had no clue what chemoradiation would do to me (other than I knew some misery was probably ahead... I had seen some TV shows). I knew little about the esophagectomy other than my surgeon said it is a pretty big operation. Good enough for me. And since I was diagnosed in March 2020, I went on my journey exactly as Covid was starting. Nice. I really didn't even notice Covid... I had my own shitstorm to worry about.

So... the post-op journey. I really didn't understand how, like Frankenstein's monster, we're all put back together, a bit differently. I knew nothing of the vagus nerves, about dumping syndrome, about trying to digest food once more. But this also served me well... because in my mind, I wasn't changing a damn thing... I wanted to eat as I always have, at least in terms of what I ate. We all quickly figure out we have far less room down below now... that becomes painfully apparent. And liquids count now... they didn't used to. And EVERYTHING I ate gave me issues... nasty tummy aches, ass explosions, cramps, fast heart rate, flushness, etc.

So, I toughed it out, not knowing what was ahead. And another bump in the road... my anastomosis was crazy tight. Who knew? But at 6 months post-op I got my first stretch... then 3 more over the next 4 months. Not perfect, but good to go! Still good now 2 years later.

So I have a different perspective now... having gone thru it all so frigging stupid. I was forcing my body to get used to everything I was throwing down the hatch... sweets, carbs, meats, fats whatever. And I simply waited on my body to re-wire itself... find a new way to get that old process of digestion done. And it did, without the vagus highway. But it just took a long time. And as 12 to 18 months went by, the tummy aches lessened greatly, ass explosions too... and I could eat a lot more, even though I still eat more often. And I do eat what I want, no differently than I did 10 years ago. But understand... that was my mindset from the start, because I was so damn stupid about the process. I wasn't one to experiment... like this food doesn't seem to be working, let's eliminate it from the diet for now. Like what!? Who the hell has time to do all that... write all that shit down... trying to lessen tummy pains? I just kept shoving it in... and my body needed to figure it out! And it finally... very slowly, did.

Feeding tube, chemo, immunotherapy all done by me. It's the feeding tube that keeps me alive and it's a keeper Trying herbal teas now and such instead of pumping poison into me. Still alive 2 years into 3b cancer and it's not from the poisons given by oncologists.

My mother had surgery July 2022 - she is now 1 year post surgery.
I have to tell you that it takes 1 year to adjust. When she woke up she wasn’t in pain - the drains were I believe the most inconfortable tubes she had. It takes few days to recover than she came home. The challenge was eating and not loose too much weight. Every month she got better and after one year can eat everything BUT small quantity … not before going to bed (at least 3-4 hours before bed time she stops). She lost weight. A lot. But she is alive and happy. She sleeps 30% (that takes an adjustment ! She couldn’t sleep well for months but now she does). It takes some love around you and some help for the first few months but you will be OK. You have to take one step at the time. Don’t think about what is next just focus on being ok with chemo and radio.
She had a feeding tube for 2-3 days I believe that is it: baby food first after a month ..: anything. Ask you doctor about immuno versus chemo