Frustration from lack of appetite

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Im 13,5 months post diagnosis  Ivor Lewis  operation and treatment all completed end of June . 
I get very frustrated that I could go all day without the urge to eat and miss that feeling of hunger it makes I realy hard to enjoy food now . 
does thie hunger ever come back ? 

  • Hi Mark, if love to help you with an answer to your question but I can't, sorry. I too am post treatment as of Christmas 23.

    Like you I have no appetite and never feel hungry. This makes eating a bit of a chore rather than an enjoyable activity. My taste doesn't seem as good as it was previously either.

    I found this on the internet, "Ghrelin and leptin are two of many hormones that control your appetite and fullness. They're involved in the vast network of pathways that regulate your body weight. Leptin decreases your appetite, while ghrelin increases it. Ghrelin is made in your stomach and signals your brain when you're hungry.21 Apr 2022".

    I had most of my stomach removed as part of my operation which would explain why I don't get that hungry feeling any more.

    I hope this helps in some way. 

    Best regards


  • Hi geo  like you eating has become a chore and not as enjoyable as before the op . How are you feeling?  my op was in march and I find that you have good days and bad days . I found that breakfast was when I’d suffer with dumping after consuming  cornflakes or  cereal that was quite milky effectivly eatting and drinking at the same time which would send me to sleep 30 mins later .
    I now prepare  oats or muesli the night before . 
    which has realy helped . 
    I feel so much more active now days as opposed to 5/6 months ago .

    im still suffering from pain in Lower right  chest area that they have checked and nothing to be found . 
    hope your getting on ok . 

  • Hi Mark, I think I'm doing quite well overall. Especially as I'm only four months post op.

    Like you I still have some discomfort across my chest, like a tight feeling. My surgeon said it was expected and that I should remember how severe the surgery was. Some shrinking scar tissue internally and nerve damage are what's causing the issue and that it will get better over time.

    While I do get odd episodes of dumping , it's not very frequent. I tend to eat and drink separately in general. I can tolerate milk and serial for breakfast though.

    Thank you for your message. Good luck for your continued recovery.

    Best regards


  • Hi Mark my husband had the op in March 23 and managed 2 rounds of chemo finishing at the end of June 23. Now his appetite and range of foods he enjoys is pretty near to what it was before we entered this world! He doesn’t get physically hungry in the same way as before but definitely enjoys eating. We can go to the pub and he’ll manage a normal size main course and a pint of beer (most of which he drinks after eating). 6 months ago I wouldn’t have thought that was possible, the body does seem to adapt over time but it’s a slow process. We’re so grateful he could have the operation especially as we didn’t know if they could remove the tumour until he was on the operating table! 

  • Hi Jane he’s very lucky ! so he’s on the same time line as myself I’d love to have a pint after a meal but my body just won’t let me rite now it’s so frustrating . 
    last night went for a carvery  and had a tiny sip of water after and it made me feel tired and nauseous I think that it’s easier to recover if you have had minimal invasive surgery so Iv been told !  but Iv got  the big scar on the back and it’s still painful in my ribs . 
    I’m hoping one day I’ll wake up and all  pain gone and eating will have fixed itself but I think I’m being ambitious . 

  • Hi Mark - nothing wrong with that hope! Paul was T4N2M0 and has a third of his stomach left and the same scar as you. Everyone is different and we decided to throw everything we’ve got to make sure we’re doing our bit. I’ve learnt a lot from this supportive forum and also the oesophageal patients association forum has been brilliant as well. We’ve dived into nutrition in a big way and are working with an integrative doctor (ex GP) who’s prescribing mushroom supplements. Let me know if you want any more details. 

    • Hi Jane Iv realised that nutrition is very important for us all in this situation and I’m very interested in the mushroom supplements or any  supplements if they are going to help ! 
      please share or I believe there is a friending facility on here  if that’s an option to share info thanks again . 
  • Hi Mark I’ve sent you a friends request (I hope!) as wasn’t sure what’s ok to share re private practitioners etc.