Worried by symptoms

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Hi all I’ve never previously had any problems with swallowing or feelings like things are getting stuck when I eat. At the end of last year I had a lot of stress to deal with. From January onwards I noticed a lot of gas and a feeling like I had to clear my throat all the time. March brought with it occasional squeezing pain in my upper left chest after eating. April I had a change in bowel habits (loose stools) and stomach pain. GP did stool tests. All clear. Now in may and I have a persistent pain behind my breastbone, feeling like food is stuck after I swallow it, bit of a cough, excessive saliva. GP has referred me to see gastro but that is months away. I was investigated for stomach pain back in 2013 and polyps were found (non cancerous) and removed. They repeated the test in 2018 and I was all clear so they removed me off the 5 year test cycle presumably to save money. Any advice would be very much appreciated as I suffer from anxiety anyway (a classic trait for those with elher Danos syndrome) so I am very worried right now 

  • Not sure if this will help but at the beginning of October I started having swallowing difficulties. Felt like there was something stuck in my throat. Went to my GP about it and he referred me for an endoscopy but warned me that, even red flagged, there could be up to a 6 week wait for the procedure and then for the results to come back afterwards. I decided that this was too long and contacted my local private clinic. Saw the consultant there 5 days later and was brought in 2 days after that for endoscopy. He then arranged a CT scan for the same day and phoned me with the results 5 days later. Not the results I’d hoped for but, seven months later, I have since had 2 PET scans, laparoscopy, chemotherapy, major surgery and am now in the process of receiving my post-op chemo. All of this on the NHS and the consultant I went to see is the one who performed my surgery. Altogether, my initial private treatment cost me £1600 and I consider that the best money I ever spent as it potentially saved me many weeks of worry. I realise that this might not be within everyone’s financial means but is always an option if you can afford it

  • I agree. I think I’m going to peruse privately after the bank holiday on Tuesday. Thank you. It sounds a bit grim what you want through to say the least! Can you tell me a bit more about your swallowing difficulties? I’ve been brushed off first with gastritis then with hiatus hernia as possibilities 

  • I had had problems with indigestion for a few years and had been prescribed omeprazol which seemed to help. My consultant reckons it’s likely that I had an undiagnosed hiatus hernia. Anyway, my tumour developed at the junction of my oesophagus and stomach (a common place) which meant that, when I swallowed food, it took a couple of seconds to see if it was going to go down ok. Eating became  very stressful experience and I stuck to sloppy foods (runny porridge, cottage pie, spaghetti bolognese, scrambled eggs, etc which were easier to slip past the obstruction. My surgery (over the course of 9hrs in theatre) involved the removal of the lower half of my oesophagus and top third of stomach and then reattaching what was left so my remaining stomach is more of a tube shape than a pouch. The procedure is called Ivor Lewis and apparently there’s a video of it on the internet that you can watch if you so desire. I haven’t. Recovery from the surgery is long and slow (6 months to a year I was told) but can be a couple of years before things really get back to a new normal. I am now 3 months post surgery so, although I certainly feel a lot  than when I was discharged from hospital, I still have a long way to go. Looking forward to finishing my post-op chemo in a few weeks as it does set you back a bit. But the cancer was killed off by my initial chemo and removed by the surgery so I’m  still alive - which is a hell of a lot better than the alternative I was given!! 

  • Hi, you say 'GP has referred me to see gastro' what do you mean?
    You should insist the GP refers you for an urgent endoscopy at the local hospital, don't take no for an answer. You should get one within 2 weeks at the most. If there is a risk of cancer they have to react with speed.

  • Wow what a journey you have been on! Keep fighting the good fight!

  • Hi Karl, at my GP these days you have to fight for everything like it’s the hunger games. She said she would refer me for urgent review (as opposed to the normal which I have been referred to) if my symptoms persist or worsen. So I’m going to do an e-consult on Tuesday morning and insist on this urgent pathway 

  • Yes do & mine's the same btw
    I would add that after my C was confirmed & I'd had the meeting with consultant he said he would get my GP to prescribe some protein shakes to drink to keep me weight up.
    A couple of days later I had a phone call from my GP about these drinks & I mentioned that I would have appreciated an immediate referral for an endoscopy for a person of my age with these symptoms (73) Grin
    Make sure you keep your weight up too, lots of 'lovely' smoothies - get a good blender if you haven't already got one. 
    Speaking as a working jazz/blues musician listen to plenty of good music to keep your spirits up!Sunglasses

  • Morning RyanE. Appreciate your anxiety and worries. Could you go privately for an Endoscopy? It would help you to get things looked at sooner rather than later. Best wishes, Julie 

  • Yes Julie. I recently came into a little money from my late uncle so will put this towards a private scope