Barrett’s esophagus

Read about Barrett’s and reflux treatments on line.

Well for those of you on this "blog" here's my story; I was diagnosed in April of 2023 (after having to leave an ETA
Festival) with esophageal adenocarcinoma and was quite upset and scared! I was immediately referred to radiation & chemotherapy specialists in Knoxville, Tn. as well as 3 sets of surgeons(all who wanted to cut me) When I am faced with what I consider serious issues I sink myself into looking into things and educating myself!
I was 75 at the time and after finding out how serious and debilitating the surgery was I told the surgeons I was going to opt for radiation & chemo and if I could get 3,or so more years with some quality of life that would be my choice! I was probably between stage 1 & 2. I was referred to a radiation MD who wanted to start treatment right away for 6 weeks along with 2-21/2 hrs. of chemo every Friday. Found out that this was "photon radiation" they were going to do but in my research found out that Knoxville, Tn. had one of only 39(at the time) PROTON radiation centers in the country so I called them right away and was seen that same week. I had an interview with Dr. Ryan Grover (an outstanding radiation DR.) and started treatments right away. The difference between the two is proton targets the tumor and stops while photon hits the tumor then goes "through" the body which could cause problems with healthy organs as well as having worse side effects. So after 6 weeks every day of radiation with chemo treatments those Fridays I was done(sort of) After waiting approx. 2-3 mos. for the "dust to settle" I had a Pet scan that told the doctors that they had made my EC go away so I got to ring the bell. Well that's not the end of it by any means. I continued to have pet scans every 3 mos.(now on every 6) but during a follow up endoscopy was told I had Barret's with dysplasia(had been told earlier I had Barret's) but now the dysplasia cells could become cancerous and that I would most likely need some sort of ablation process! I said okay let's start. Unfortunately where I now live (Brunswick, Ga.) there was NOONE that could perform that procedure so my choice was going to Savannah or to the Mayo Clinic in Jacksonville. Guess where I picked. Again I was fortunate in that I got put into the hands of one of the country's foremost gastroenterologists (Dr. Eluri) that could do the procedure. My wife and I have to go on a Thursday, spend the night and the procedure is done early Friday morning so after I am out of recovery we can head home. I have had two "cryoablation" procedures and they (so far) have been successful in reducing my Barret's Esophagus and preventing the cancer from reoccurring! I am now 77 and have to take my daily naps as I tire out but am eating fairly well keeping away from anything too spicy but am able to still have my glass of Cabernet with dinner and am going on an 8 day ETA cruise next month!! I have been very fortunate and realize "life is terminal" so I am doing what I can to enjoy every day. I wish "everyone " (along with those caring people who also have to deal with this "God awful disease") the best moving forward and to stay positive as difficult as it may seem! Two recommendations I would make are if you have the wherewithal to do it is, if you need radiation treatment find a facility that offers PROTON and if you can get both a consultation and treatment at a Mayo Clinic I would "highly recommend it! So Doctor Gary,(I say that because in your comments you sound like one) what might you say about my synopsis and story??

Research 3 things to treat Barrett’s. Ppi, sucralfate liquid that coats esophagus and stomach, and folate.

Chip, Well done on taking charge of your own healthcare and making decisions that work for you. Well done on doing an ETA cruise (things that you enjoy). You are able to eat well now (which is not the case for some time after the surgery), so eat up, stay healthy and keep up the good fight. What a great success story. thanks for sharing. I celebrate with you.

Well done, Chip. My husband had Barrett's esophagus and had an ablation at Lahey Clinic, circa 2012. He had routine endoscopies since and had developed Barrett's for a second time, this time with dysplasia. Biopsies revealed cancer cells in the cardia area. A small, pea-sized tumor was removed but still cancer cells remained, at which time we saw an oncologist and surgeon. The cancer was stage 1 with no lymph nodes involved. Instead of researching, as you wisely did, we made the wrong choice. Hubby was determined not to have to vomit constantly and agreed to the surgery instead—nothing could have been worse. For the first year (plus), he vomited 7 or 8 times each night, became malnourished and lost more than 100 lbs. The recovery has been brutal and almost two later he is still suffering. Surely the surgeon knew this would be a likely issue but never said anything about the probability of post-surgical nausea and vomiting. Instead he said that my husband was a "mystery." You were smart to do research beforehand and this should be a lesson to all of us. Familiarize yourself with all the information that is available: forewarned is forearmed.

Stever1,
Thank you for your very nice comments and assessment of my "epistle". lol.
I (along with my wife's support) try to remain positive and enjoy each day as it comes.
Thank you again and stay well!

aheid,
I am so sorry to hear the hardship you "both" are having to deal with because of this absolutely terrible disease. I was in the right place at the right time and through a extensive research feel I have found the right people and the best way "for me" to continue my fight.
I have been very fortunate which is not to say things could not change but having said that I do my best to remain upbeat and positive. My heart goes out to you and I will pray that your husband's situation will improve. Stay as positive as you can and if you don't like the answers you are getting find new ones. Keep me posted please.

Well Dianne... statistically, not many cases of Barrett's actually turn into esophageal cancer (I think maybe 6% ?). But that doesn't mean Barrett's patches within the esophagus cannot cause problems. So... no high grade dysplasia cells seen with your Barrett's... so what about dysphagia? Is swallowing OK? If so... then so far so good. If not... then possibly an ablation procedure would be useful. Just want to be sure your QofLife is acceptable to you. And stay monitored. EC can take forever to develop. But once it does, it can move at warp speed.

Gary

So Elvis cruises only? Guess the wife loves Elvis too! Just so you know... I know many patients 75 or older who went on to have an esophagectomy and are doing just fine. One fellow had his in November? At age 83. It just depends on the patient. But surgeons and tumor boards are usually quite careful about who they recommend for surgery. I don't recall you stating what stage you were... I'd want to know all details about your diagnostics... EUS, biopsies, scans results, etc. Did you get a TxNxMx designation for your EC? If truly stage 1... then surgery is almost a sure bet you won't see your cancer again. But yes... believe me, I know it's a rough recovery... and it takes a 12 to 18 months to get back to a good QofLife.

But not all Barrett's must be addressed... especially if not causing you any major discomfort or swallowing issues. But repeated ablations on large portions of your esophagus can also cause you some issues long term... so you must proceed with caution to see how well your esophagus heals.

But if your QofLife has returned, and especially if your EC has not returned... then good for you! Party hearty pal! Well done.

Gary

Gary after a car wreck whiplash injury in 2014 I developed swallowing problems. After 1 year of swallowing issues I was diagnosed with critical malfunctioning epiglotti which was causing the swallowing issues. I basically learned a better technique of swallowing and I am just living with it. I do have to be careful and attentive when swallowing pills especially. I would not drive and drink something, or eat something, or take a pill while driving because I might only get it down a little and it’s stuck and have a need to bring it back up. At times now I have this esophagus cough. Refreshing to get so much relief with my burning mouth but have burn break throughs and take Pepsid ac complete for those.