Incredibly worried about progressive symptoms meaning cancer

Posted , 4 users are following.

Hi all,

For a brief background, 32 year old male, I've been a GERD sufferer for some time now, not sure how long but diagnosed via endoscopy 11/2017. Initial endoscopy for difficulty and mild pain while swallowing. Felt better and went off my PPI, but in 11/2018 symptoms came back (painful, difficult swallowing). Had a barium swallow done 01/2019 which showed obvious reflux and delayed/abnormal movement when supine. Again like an idiot went off PPI.

Fast forward to today, for the past at least 8 or so months I have pain whenever I swallow anything, even saliva at times. I've been on pantoprazole for the last ~2 weeks, but the pain and difficulty I feel when I swallow is driving me nuts, often times feeling like food is stuck in my mid-chest, some regurgitation etc. Pain also lingers after I've eaten for sometimes seemingly hours.

I've asked for another endoscopy but my Gastro is skeptical, even telling me that she doesn't think it would be helpful, but the severe symptoms have me worried sick. Could some combination of stress, poor diet, and not being on a PPI cause these symptoms for such long periods of time? Could 2 years from an EGD and one from a barium swallow be time for something more serious to develop, or are these really esophagitis symptoms? Worried sick about cancer (naturally health anxious as well...).

Any advice is appreciated. Thank you!

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12 Replies

  • Posted

    Have your tried making lifestyle changes. You were wise to come off ppi as long term use leads to cancer. These symptoms do indicate gastritis or esophagitis. im waiting for an endoscopy. You have to take it seriously and change your diet, stop smoking drinking etc. Talk to you doctor about change of medication. changes in diet and quitting caffeine is helping me quite alot. You should try these changes. Pain swallowing mean s you have ab inflammation of the esophagus.

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  • Posted

    Hi. I'm going through pretty much the same thing. I was put on PPI following endoscopy in 2015 and was sent back to the Consultant because of how long I'd been taking the tablets. I was on quite a high dose so the hospital suggested reducing the dose and straight away the symptoms came back so I'm now in the unhappy position of having to endure the symptoms whilst waiting for another endoscopy appointment and worrying about my symptoms.

    What the Consultant told me was that PPIs don't definitely lead to cancer but they can cause polyps which can become cancerous over time. They can also compromise your immune system because you're suppressing stomach acid which is one of your key defences against disease entering your system.

    I think if your doctor felt there was a risk they would re camera test you for definite. It may be worth going to see a dietitian for some advice as over the years I have had symptoms such as yours that have disappeared when I've changed something in mt diet.

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    • Posted

      Thank you for the response - I know being in this boat sucks. I think part of it is that I haven't been on top of either taking my PPI's, or my diet, so I'm going to actually cut some things out (starting with dairy and caffeine) to see if it helps. It's hard to think that something that is so painful and uncomfortable isn't a serious issue! Can I ask what prompted your first EGD back in 2015?

      What I've read about PPI's and cancer is that if you take them for too long without any kind of maintenance scopes etc. you could be seeing pre-cancerous or cancerous changes that are masked by the PPI. Right now I understand I need to be on them to hopefully allow my esophagus heal, but hopefully I can wean off them afterwards.

      I have an appointment coming up on 1/14 and I'm sure that they will do a repeat endoscopy, I just need to take control of my anxiety because I understand that can also increase symptoms. I know that even for Barrett's esophagus without dysplasia, follow up EGD's are only done about once ever three years I have that on my side. Health anxiety is a cruel mistress though!

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    • Posted

      Hi again. My initial scope was done because whilst I had had GERD for many years it suddenly got worse. My father had just died so I suspect that may have been a contributory factor.

      The info re the long term use of PPIs causing cancer (or not as the case may be) came from the Specialist I saw the other week so I would believe that over internet stuff. There's actually some info on this site on lansoprazole and research on long term effects. May be worth having a read to see if it reassures you.

      If you don't take your PPIs regularly it is surprising how quickly things can deteriorate (within a week or two) so I think if you're going to try taking them regularly and look at your diet, things should improve.

      I do genuinely think though that if there was anything to suggest cancer they would re-scope you. From my appointment last week the red flags appear to be lump in your tummy you can see from the outside, vomiting, blood in stools and unplanned weight loss.

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    • Posted

      Just one other thing. If you miss PPIs, you get something called rebound reflux which means your body clocks the fact there's no acid suppression and massively starts producing more acid (ie even more than would have been there normally) to compensate and mucus to control it. So all hell breaks lose in other words. I think my doc is trying to wean me off it slowly to avoid this but not easy when the tablets I have come in 30mg doses!

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  • Posted

    hi eric

    really sorry you are suffering so much.i too am worried sick the same way. my symptoms are horrendous burning in chest and stomach despite taking high dose of ppi. i had a camera test done in april this year which showed iinflamation and like you im worried sick that because of daily burning it has turned into the worst. it burns day and night. can you beg your doctor to have another look for you. im going to plead with mine in jan to check again as i dont think this is normal . i wish you luck and peace in your head. happy xmas.

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    • Posted

      What I will say, and the thing that is keeping me sane, is that this is a very slow progressing disease, so if you had an EGD in April it's unlikely that there has been any serious change to your condition. I also know that if you are not on top of your medication and your diet, esophagitis is something that will recur.

      Also something to think about is even something as routine as an EGD is an invasive procedure and carries risk. Doctors don't want to do more invasive screening than they have to, and given the generally slow progression of the disease you might just have to be patient.

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  • Posted

    hi kate65092 where was the inflammation in your stomach or esophagus please. i am unable to eat anything solid for 2 months now.

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