Newly diagnosed with esophageal cancer: Where did you seek care?

Well, I can tell you about my 77-year-old husband’s experience, with similar circumstances to your husband. Because cancer in the digestive system runs rampant in his family, he is scoped regularly (both upper endoscopies and colonoscopies). About twelve years ago, he developed Barrett’s Esophagus and had an ablation to remove the tissue at Lahey Clinic. Since then routine scopes (with biopsies) revealed no issues. Then, last February he had an endoscopy that, to the eye, looked good. The doctor told him if the biopsies came back negative, he could return in three years rather than one. I was shocked to learn a few days later that there were some cancerous cells in the cardia area (where the esophagus joins the stomach). Then he too, just as with your husband, had an esophageal ultrasound and subsequent removal of a pea-sized tumor. The doctor felt that he had gotten the entire mass but more biopsies were taken. Unfortunately, they found more cells—he was at Stage 1b.

There were two choices: radiation and chemotherapy or esophagectomy to remove the cancerous portion. Even if electing the former procedures, an esophagectomy might still need to be performed, so we chose the latter. In early June of this year, he had 10-15% of the lower esophagus and about one-quarter of the stomach removed, a pyloroplasty was performed, and he had a j-tube inserted for tube feeding. This is major surgery with the possibility of a significant number of issues. In hubby’s case, the initial hospital stay was increased from the estimated five to eight days to nineteen due to a pneumothorax and possible leak. Once they learned that there was no leak and he began eating soft food, he was released—however, nausea and vomiting issues that he had been experiencing while in the hospital, together with a failure to eat enough continued and he was losing weight so he was re-admitted to the hospital and put back on tube feeding. He remained in the hospital until late-July.

Even ‘though he was home, matters didn’t get any better. He was on enteral feeding for sixteen hours each day and was hardly eating any real food at all because of constant nausea and/or vomiting. He tried every medication under the sun to combat the nausea, all to no avail. He was vomiting every hour all night long. When he wasn’t vomiting, he had dry heaves. He even got a prescription for Dronabinol (synthetic THC) but that made him feel dizzy—or faint—and on one was occasion, he passed out—and still felt nauseous all the time. Since the vomiting was occurring primarily overnight, we thought maybe it was his position while sleeping. But then in early October when he was scheduled for a tube exchange, he had to fast—and that included no overnight enteral feeding and no food by mouth. The next morning we were surprised by the fact that he hadn’t vomited. After the tube exchange, we didn’t resume tube feeding—and still no vomiting (but some nausea still existed). It turned out that he wasn’t tolerating the formula that he had been on for nearly three months. We went to a different formula and the vomiting is much less—and some days not at all.

I’ve read hundreds of anecdotal accounts from people who’ve had this type of operation and all have issues—delayed gastric emptying (which my husband experienced on a couple of occasions), dumping, trouble swallowing, no voice, hiatal hernia complications, nausea and vomiting, no appetite, unable to feel hungry or full, etc., etc., but almost every one of them say that it will take three to six months before you start feeling better—and of course, he’ll have to change the way he eats. My husband, at a little more than five months is still dealing with vomiting (on a reduced basis and most often right after he gets up in the morning) and being unable to tolerate many foods. Food is something else—in hubby’s case, he can tolerate Boost, ice cream, puddings and many soups but his stomach (or what’s left of it) seems to reject most other food items.

Bottom line is that this is a brutal operation with a rough recovery period. In my husband’s case, I think if he had to make the decision again, he might very well have chosen to try chemo and radiation first.

Welcome to the esophageal cancer group. You are indeed very lucky to have caught it early. I didn't catch mine until I had difficultly swallowing and endoscopy found cancerous tumor in lower esophagus. But after 28 days of chemo and radiation the tumor is gone and there is no more treatment required for esophageal cancer. The bad news is that the process is very tiring and the side affects are no fun. I was on a feeding tube for a while when I could not eat. If you have questions, I'll be happy to try and answer them?

Hello!! I understand that one of the best cancer centers in the country is MD Anderson in TX. I don't know how far you live from there. But all the major cancer centers, like Mayo, have programs, housing for people like you and me that doesn't live close. If you can reach out, make inquires.

If you wanna know the real truth ... I consider 5 months post-op to still be very early on. Changes come in the second year post-op ... just gotta keep pushing the limits... eat and hurt... all the time! The body just takes forever to rewire itself to get digestion done again. Those vagus nerves are gone... and his body is lost. But I'll tell you... I have no clue about going thru this at 75 or older. I went thru it all almost 4 years ago at 61... and that was tough!

Be well.

Gary

It’s obvious by your lengthy post-op period, that you have much more experience than we do. I would like to know if you had to deal with continuous nausea and vomiting—and if so, what you did to alleviate it—or is it even possible? The first sip of water in the morning causes nausea and often vomiting for my husband. Ditto with food and the only thing that seems to make him feel any better is to lie down until his stomach settles, which means that he is not sitting up for the requisite amount of time after eating.

Hubby’s vagus nerves were also severed but I understand that this is the standard operating procedure with this type of operation—nevertheless, it presents an entirely additional set of problems.

Hope you can give us some suggestions on handling the after-effects of this operation.

I'd love to tell you of MY post-op journey, it has some meaning, some lessons embedded, but it is MY journey, and not your husband's.

But I have talked with hundreds of others... so hearing of their journeys has taught me much. I've seen the "bell curve" of these many journeys... the extremes and the averages.

So... what is to come for your husband? Hard to say. I'd certainly be more disheartened if he were 18 months along... as he should be doing a bit better.

If like to say it's predictable, what we all see and feel as we attempt to eat and drink post-op. Most of us see (in general) similar things early on post-op.

First off, our tummys hurt when we put food or drink in our new stomaphagus. And this can be anything to a mild tummy aches, that passes in less than 15 minutes... to a serious tummy ache that you must lay back on the sofa for maybe an hour. and i won't even try to explain these pains as being Dumping Syndrome or not. Now... does ingesting food and drink also cause nausea... and a vomiting reflex? Maybe... for some, but not usually. Most will tell you it's not possible to "classically vomit" as we did before an esophagectomy because those nerves (and muscles) have been cut. Now, to have that dry heaving reflex is one thing, but to actually swallow food, where it gets all the way down, and to then vomit it up... not supposed to be possible for us. But yes, I've had many tell me they can still vomit... and usually projectile vomit. Weird.

Now nausea... that's a strange one. It's all over the place. I know a few who are 3 years post-op, still NED, but they suffer from nausea a lot! And not just related to eating and drinking.

So... how to get rid of this nausea and vomiting? In my mind... you can take meds to help alleviate these things... like Zofran, Zyprexa, dexamethasone, etc. But obviously treating symptoms is not the same as curing the problem.

For me personally... I simply powered thru it (ignorant of everything in the world... I sought no advice at the time). I only knew EVERYTHING caused me issues. I had to keep shoveling food in and see if my new stomaphagus would expand over time (it did!), and my body would find a new way to get digestion done once again (in a somewhat acceptable fashion). And this happened as well... but it took a long long time.

Most of us see similarities. Eating early in the day is usually easier on the tummy... after 3 pm or so seems to hurt more. Volume is almost always a problem... eat less more often... far less tummy aches. Over eat even a bite or two... NASTY. Hot or cold drinks... can cause more issues. Sugars... maybe can cause more issues as well.

But things change over time. But don't be so quick to change because some particular food or drink seems to not be working as yet. Just keep exposing the new stomaphagus to everything. It will adjust... over the next year.

Welcome, @glassamigos. I can imagine you and your husband are both stunned and reeling with this news. Even the doctor was surprised. But thank goodness that this was found as an incidental finding while undergoing other medical procedures and your diligent doctor followed through.

I'm sending you a virtual shoulder to lean on as you brace yourself for the multiple diagnostic tests coming up this week. I know it's grueling, but very necessary to asses the extent and stage of your husband's cancer so that his team can determine the treatment plan.

Here's more information about staging and grading: https://www.cancer.net/cancer-types/esophageal-cancer/stages-and-grades

It's important to write your questions down to prepare for your next appointment. It also helps the calm the whirling thoughts racing in your mind. To help you prepare for your next appointment, click this link and scroll to the very bottom to see a list of questions you may wish to ask:
Esophageal Cancer | Mayo Clinic https://www.mayoclinic.org/diseases-conditions/esophageal-cancer/diagnosis-treatment/drc-20356090

How are YOU doing?

@glassamigos, I forgot to answer your main question about where to go for expert cancer care. Naturally, in Texas you have MD Anderson relatively nearby in Houston, TX. I, of course, recommend Mayo Clinic.

Mayo Clinic doctors from a wide array of specialties work as a team to provide the most appropriate care for people with esophageal cancer. Fellow esophageal cancer members like @pellaw @maryhelen @survivorsuz @puprluvr @lori57216 can tell you more about their care at Mayo Clinic. There are locations in Phoenix AZ, Rochester, MN and Jacksonville, FL.

Here's a link to learn more and submit a request for a second opinion if you like http://mayocl.in/1mtmR63

Hello glassamigos-I’m an esophageal cancer survivor of 5 years in April of 24 having all of my staging, proton radiation, chemo, and surgery at Rochester, MN.
I invite you to view my complete profile to follow along with my esophageal cancer journey.
I’ll forever be grateful to Mayo Clinic for the wonderful care I received from staging to my esophagectomy at St Mary’s Hospital.

I was dx'd with stage 4 in Oct. / Nov. 2019. All the chemo / rad. and I still had esophagectomy in April 2020. I was scheduled to be a guest at St. Mary's hospital / Mayo / Rochester, MN for a week but was extended another week as my drainage tube got infected. No big deal really. My husband was really quite relieved as he wasn't ready to play nurse yet at home. 🙂
Feeding tube for 10 - 12 weeks. It was quite the transition to learn how to eat again. Smaller bites, chew, chew, chew lots of gravy / broth. Some days it's pretty challenging. I've had some post op issues that arise from the surgery as we were told might occur with such an extensive procedure. Diaphragmatic hernia that was repaired just the first part of this year. In all honesty that was more painful (recovery wise) than the esophagus surgery itself. But we push thru and carry on the best we can. It's most definetly a learning curve and everyone must figure out their own "curve" and do the life adjustments accordingly. I'm just so grateful that I wake up every morning to be able to complain about things. 😉
Lori (still trying to live the dream one day at a time)