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Reflux with blockage that doesn't even let water through
Hello. My dad was recently diagnosed with esophageal cancer. It is either stage 3 or 4 - the tests so far haven't been conclusive.
Unfortunately, he wasn't seen until he basically couldn't swallow even water. He got a j-tube a couple of weeks ago and he will (finally!) start chemo next week. He is taking 2 medications to help to alleviate the reflux that he has been experiencing (the medication is being administered through his j-tube), but it isn't doing enough. It is so bad that he is having a great deal of trouble sleeping. He doesn't complain easily (which is one of the reasons that it took so long to be seen for the swallowing issues).
Which type of doctor would be the most useful to press for some additional options to try to relieve his discomfort? PCP? Gastroenterologist? Medical Oncologist?
He will be starting the chemo at the Cleveland Clinic, but his care up until now was being handled where he lives in NW Ohio.
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In early June 2025 I received that same or very similar diagnosis. Mine is stage 4 small-cell esophageal carcinoma. My symptoms were the same as you describe - where I was nearly suddenly unable to keep down even liquids and was living on the tea/Gatorade that did manage to not come immediately back up when I tried to swallow. I lost 45-50 lbs in about a month. My oncologist was hopeful that it would not take more than 'a few days' for the chemo to shrink my tumor enough to begin getting and keeping down food. Based on that, I held off on having a feeding tube surgically installed.
For me, the chemo worked exactly as hoped. My first chemo was on a Friday and I was able to eat a couple of slices of Pizza on Sunday evening. I've now completed chemotherapy and my last scan was clear. I'm continuing on immunotherapy on an indefinite timeframe with the plan of getting CT scans on a ~quarterly basis.
My advice is to discuss everything with his oncologist, but hold on through that first chemo treatment to see how he responds. Note that my cancer was/is small cell, which is highly aggressive but also highly responsive to the chemo.
Hope this helps.
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1 Reaction@throatgonebad Thank you. This is very helpful! My dad lost ~40 pounds too. It has been almost a month since he got the tube. He hasn't put any weight back on, but he is no longer losing weight. He wants so much to be able to eat again and his new oncologist indicated that he thought my dad would be able to eat again after he gets through the first few chemo/immunotherapy treatments. Fingers-crossed that he can. I have hope that if he can swallow again, it will be easier to manage the acid reflux too.
It seems that all of the doctors (except perhaps the new oncologist) can't seem to grok that he can't swallow ANYTHING right now. The latest advice from the PCP was to take a liquid medication by mouth for the throat followed by drinking some water... It makes me feel like screaming - 'HE CAN'T SWALLOW'.
I'm so happy that your last can was clear. I hope your scans continue to bring good news.
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1 ReactionYour dad would be best served with an oncologist who's specialty is GI and has experience with esophagectomy patients. We are so different in terms of how GI functions post-surgery that many drs don't get it. And it can be a struggle to get the body to respond to the new anatomy.
Also look into oncologic nutritionists who can help your dad get the nutrition he needs through the tube. I went through a few drs and nutritionists until I found people who could help and didn't just pay lip service or tell me no that couldn't be happening (food not going down for example). So frustrating!
I'm 8 years post-surgery (squamous cell) and I'm still learning new ways to manage my body so tell your dad to hang in there! He needs better support which he will hopefully get @ Cleveland Clinic.