Esophageal cancer treatment: Anyone have good experiences to share?

Hi my name is Mark, i'm 65 and was just told on Monday I have Esophageal cancer. I need to go have a EGD & An Pet CT. to find out if it has spread. Little down about the news.
Was hoping to get a little advice on the road ahead.

Thanks

Things improved for me greatly in my second year post-op... so that's both the good and the bad news! Just knowing that you haven't yet reached a plateau in your post-op journey is helpful... but also the fact that it takes sooooo long can be a bit depressing!
Now I had a setback post-op... my anastomosis was crazy tight. Of course I had no clue as to why 3 months... 4 months... and finally more than 5 months post-op I still couldn't swallow a half teaspoon of rice! I was still dropping weight! Can't say I was 100% suicidal... but I was starting to think about it a tad... like is this all there is... is this my quality of life going forward!?

But they sent me in for a stretch at 6 months post-op. My GI doc, who was crazy experienced handling us EC patients and esophagectomy patients... brought me along slowly. He told me I was only 5 mm open at the anastomosis. Normal healthy folks are 25 to 30 mm. He told me that was never going to happen again... but he'd eventually get me "passable". He only stretched me to 8mm the first dilation.... but heck, 8mm is 60% better than 5mm! But he didn't want to cause a perforation... so he said he'd see me in 4 or 5 weeks... we'll see how things were holding... and go from there. But he did say that waiting until 6 months post-op was a good thing as my scar tissue at the anastomosis had firmed up and would now hold a stretch much better. But after another 4 months and 4 total stretches, he got me to 17 mm. Still not perfect... but close enough! I put on 26 lbs in maybe only 2 months! During my entire EC journey I went from 220 lbs down to 160 lbs. But once the stretches started I was back to 185 lbs quickly... and within a year I settled in at 195 lbs. I'm at 198 now, years later.

But in terms of eating... you just adapt. Don't ever think that this food won't work, or this drink won't work, or I can't eat at this time of day, or cold vs hot, or sugars or spicy or whatever just won't work any longer. NOPE! Just keep shoving it in... force your body to figure things out... get re-wired. It may take a year or two... for all those tummy aches and intestinal pains to subside... for firm poops to come along once again... but it does happen! It's just slower than slow. I now eat whatever I want... doesn't matter. If I want to eat two bags of M&Ms... or 4 cookies... or a dish of ice cream... no big deal. Red or white spaghetti sauces... sausage, whatever... it all works. Now I may take a Tums or two while eating... or some Gaviscon at bedtime... just to be sure I don't suffer any nasty reflux... but it's all good now. It just took about 18 months post-op.

But early on... almost nothing you eat or drink seems to work... where you don't suffer dumping syndrome, tummy aches, ass explosions... whatever. But you can't give in. Sure, you cut up your pork chops or whatever into smaller pieces, chew well, to make things go down better. You get a stretch or two or ten if you need them.... but usually in time... things improve and become quite acceptable. Of course all of this only matters if you stay NED... no recurrence. Otherwise it's time to put your game face back on and get treatments going once again.

So yes... IT SUCKS! Of all the things we go thru, the post-op journey back to normal digestion (if we can call it that)... this is by far the hardest. Much tougher than chemo, radiation, the esophagectomy itself, and adjuvant immunotherapy. It's just because it is so fking slooooow... and you must suffer daily... and your future is uncertain... and IT'S DEPRESSING!!

But you stay the course... eat what you want... often... make your body adapt. But just remember... other things can be going on that are not related to our EC or the esophagectomy. It's just that we tend to think of all that we are seeing post-op as due to these things. But you could be developing some allergies... or you could become more lactose intolerant (common for many of us as we age). Or maybe after all our treatments our taste buds have been altered some... alcohol doesn't taste as good any longer... or coffee or whatever. I've talked with hundreds of us esophagectomy patients... I've seen it all.

Be well.

My Sister was diagnosed with Stage IVb cancer in October. After unimaginable grief and consternation and a poor experience with a local medical center, she ended up at City of Hope in Duarte. She's been on chemo since December 2023 and the lesions in her liver have all but disappeared. Sure, she suffers some side effects from the chemo: still doesn't eat a lot of food, but she has an appetite; her stomach isn't happy most of the time but her energy level is good, she's looking better, holding her weight and about to embark on a promising treatment, which is more aggressive -- her choice to do so. She had a feeding tub, because she couldn't even swallow water. The tumor shrunk and the feeding tube (she referred to it as a garden hose hanging out of her stomach) has since been removed and is all healed over. She shaved her head because she didn't like the hair coming out in gobs in the shower, it's growing back in, but she finds she likes the really short hair. She drives down to LA from Sacramento every 2 weeks for her 3 days of treatment, sometimes by herself.

We found a lot of encouragement from this web site. There are people, perhaps not active here because their cancer isn't as active, who are several years out and still functioning and happy. It's good for you to ask for good news, because the good news is out there. Stay strong and, as bleak as it may feel, stay with the treatments. My sister says of the treatments: "I've never been so happy to be sick". The medical progress being made is so very encouraging. I'm sure she wouldn't mind talking with you if you need to hear it from her; just let me know and you can IM me your phone #.

If you're not already involved in a cutting edge medical facility, perhaps check one out. Mayo has an excellent reputation take a look at their web site, if you haven't already:
https://www.mayoclinic.org/diseases-conditions/esophageal-cancer/care-at-mayo-clinic/mac-20356094#:~:text=Mayo%20Clinic%20is%20dedicated%20to,Cancer%20Institute%20comprehensive%20cancer%20center.
Best of luck to you, stay strong and try to stay positive. You have a rough few months ahead, but think long term and try to stay positive. Keep talking with the survivors who can help bolster you.

All the best,
Aimee

Here's wishing you the best. Good luck, God bless 🙌

Same day I got my EC typed and staged I wound up being admitted into the hospital. So I have adenocarcinoma and it’s stage 4. My pain is due to metastasis of the spine. I also have some in my liver and nodes in my chest. So, it’s inoperable and incurable. I will start chemo next Wednesday. Also to undergo 10 treatments of radiation. I started on fentanyl patches 24 hours ago but between pain and inability to get anything, even fluids into my stomach I went to ER and was admitted for care until surgery for a g tube which happens at 2:00 tomorrow. I should be back home in a couple days able to nourish and hydrate and ready to face the chemo and radiation that starts next week. After the first week of treatments I hope to be able to continue on working my job as before, minus time losses required for treatment and doctor appointments. Also hoping to continue my metal detecting hobby. And so is my EC status.

Same day I got my EC typed and staged I wound up being admitted into the hospital. So I have adenocarcinoma and it’s stage 4. My pain is due to metastasis of the spine. I also have some in my liver and nodes in my chest. So, it’s inoperable and incurable. I will start chemo next Wednesday. Also to undergo 10 treatments of radiation. I started on fentanyl patches 24 hours ago but between pain and inability to get anything, even fluids into my stomach I went to ER and was admitted for care until surgery for a g tube which happens at 2:00 tomorrow. I should be back home in a couple days able to nourish and hydrate and ready to face the chemo and radiation that starts next week. After the first week of treatments I hope to be able to continue on working my job as before, minus time losses required for treatment and doctor appointments. Also hoping to continue my metal detecting hobby. And so is my EC status.

Pretty cool. How long after surgery were you back to eating normally? I mean regular foods like burgers and fries, steak and potatoes, fried chicken? I know it'll take a while before I return to the volume I was used to, I just want to know when I can expect to get back to the foods I love. I was 165 lbs. on my best day standing 6 ft. tall. But I ate like a horse. Now I'm down to 128 lbs and can't eat freaking cereal.😭 I hope it didn't take 4 years. I'm almost 65 and I can't imagine waiting 4 years to get back to normal.

I came through my 5 chemo (carbo/taxol) treatments and my 28 radiation treatments without side effects except for about every 3-4 days after treatment I was fatigued. After my treatments were over I did have 2 weeks or so of what I would categorize as horrible side effects. If you have the right meds though it gets you through it. Nausea, I was given Zofran (Ondansetron), but it didn't work well, Phenergan suppositories worked much better. Also for esophageal spasms (which made me throw up anything I'd try to drink/eat ) was prescribed hyoscyamine which you let dissolve under your tongue up to 6 x a day. I also received supplemental fluids at the infusion center probably 4-5 times which helped rehydrate me. When I took the hyoscyamine(antispasmodic), I'd wait 30 min and then eat/drink soft, liquids, not too cold and not too hot. I also had symptoms of copious amounts of mucous secretions. Mucinex worked for that. Spit out as much mucous as you can because mucous irritates the stomach. After the 2 weeks immediately after radiation treatments I didn't need the anti-spasmodic, mucinex, phenergan, and you'll be able to eat colder and hotter foods, liquids. Albeit the amount of food I can take in is about 1/3rd what I took in before. My throat is slowly decreasing in pain, discomfort. My stamina is slowly increasing. I'm taking small walks in my yard every day, doing more housework (as tolerated). I nap when I feel I need to. Eat 4-5 very small amounts of a balanced diet a day. Always get in your protein. Next for me is my surgery in July. I will have the lower 3rd and 30% of my stomach removed. I will have a J-tube (feeding tube in my small intestine) inserted during surgery. I will not be able to eat/drink for about a month while the surgery heals. Dietitians will work with me on my tube feeding supplements and work on getting my bowels to be regular and not diarrhea. The feeding tube will only be in about a month or so, then I will gradually learn to eat/drink again and in the right amounts with supplementary things like Metamucil to help with elimination. So as you see it's a journey with hope sprinkled here and there with the ultimate goal of being without cancer. I hope and pray your journey is better and better and you are successful. I lean on my faith for the most part.