Hello, New member

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Hello all. New member here so thought I’d share my experience so far. 2021 I had a referral from my GP due to symptoms of feeling bloated and struggling to eat certain foods. It all began with a colonoscopy which came back as some mild IBS. I was then sent for a CT scan with contrast just to be sure of nothing else. It came back as I had thickening of the esophagus wall. Appointment booked for Endoscopy to investigate. I had the Endoscopy and was told they had found a small nodule at the GOJ and I also had an hiatus hernia. Biopsies were taken and they came back as High grade dysplasia. I was then referred to another hospital. At this point we went into full swing coronavirus so understandably things got delayed so I waited and waited. Fast forward to September this year and I still hadn’t heard from any one and I’d started to feel full very quickly when eating and noticed my clothes getting baggier. Went back to my GP who again referred for testing. I had a phone consultation and they couldn’t believe I’d had no contact from the referral 2 years previous and it was decided I better have the procedures re done before any thing else. The CT with contrast appointment came first followed by another colonoscopy and endoscopy. They found a couple of polyps in the colon which they removed at the time and said the growth in my esophagus was still there so took more biopsies and it would take a couple weeks for the results. I patiently waited 2 weeks and heard nothing. A week later and something told me to check my NHS app. There I found a letter addressed to my GP with my results and that’s how I found out I had adenocarcinoma of the esophagus. Not a great way to find out and to be honest I was emotional but also angry!! It took me days of ringing around trying to get answers but got no where so emailed a letter of complaint to the hospital explaining how I’d found out my diagnosis and how I’d hit a brick wall with getting answers with what happens next. PALS got involved immediately and a full investigation started. I’m now laying in bed struggling to sleep as I have my first appointment tomorrow with the consultant after they held a MDT meeting. Do I find out options to treat at this meeting. Will I find out the staging or is this just to tell me what I already know and there’s more tests to do. Sorry for the long rant but I’ve felt the need to get it out there and off my chest 

  • HI Sorry you find yourself here, what a way to find out im sure you are riddled with anger from that.  As far as I remember after the consultants had the meeting my partner found out the staging and what treatment plan he would get.  So hopefully you finally get some answers and a plan to get you the help you need.

    Wishing you all the best and try to stay positive as you can once the appointments begin we found it was non stop after that x

  • Hello. I can totally relate to how you feel about how you found out about your diagnosis. Mine was similar! I had an endoscopy on 24 May this year and was told straight afterwards it was 'likely cancer', which was shock enough. They explained they'd taken 8 biopsies and I should have the results in '2 to 4 weeks'. It was absolute hell waiting. I, like you, had a feeling to check online and found the results on a letter sent to my GP that was on my GP notes. I was home alone at the time, when I read it was adenocarcinoma. 

    I complained to PALS and received an apology, and apparently they are 'putting things in place to ensure it doesn't happen again', but I fear this happens a lot. The procedure for being told seems to vary so much.

    Once under their wings though, treatment has happened swiftly and without any more hitches, but I do use my Macmillan contacts to help if I feel I'm not being told things quickly enough, or getting my appointments on time.

    I wish you well for your treatment. It's hard, but effective, and this forum has been a good and reliable source of support. You're not alone. x

  • Thank you for the replies. I had my appointment this morning and I’m being referred to a London hospital for further testing. PET scan, laparoscopy and endoscopic ultra sound. I’ve been told these will give me my staging and also provide the information to the team to enable the treatment options. They said it does look like it’s been caught early enough and as long as the tests confirm I will be offered surgery relatively quickly. I am still very angry with the way I found out but now I know things are heading in the right direction feel a little more at ease.

    Im so thankful that this group exists. It’s helped me realise I’m not alone and is an absolute god send in the information available through your own experiences while I’m looking for answers