Hi 4 year esophageal cancer survivor here

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Hi all. My partner was diagnosed with brain cancer in September 2017. Unfortunately she passed away in September 2018. I had left my job to care for her and I was having discomfort with eating for the year I was caring for her. But I put that to the back of my mind because she needed me. So a month after she passed I went to my GP. He sent me for an endoscopy. Before I went home the doctor wanted to see me. He said he found some pollops which are usually not cancerous but I had a gut feeling that it was. A week later I was called in for my test results. My daughter came with me and when we went into the room and a nurse was there with the doctor I knew it was going to be bad news. And it was. Stage 3 n0. So I had my port put in for the chemo. But the worst thing was going back to all the places I had been with my partner for her treatment for my treatment!!! Anyway 4 rounds of Flot chemo then 6 weeks later a12 hour surgery. They told me they had got it out with good margins and they took 19 lymph nodes and 3 were diseased. Then straight away I got a chest infection. I was in hospital for 6 weeks. By this time I had lost 60lbs in weight. I had a feeding tube in which I hated. Then I had another 4 lots of chemo be it at a reduced dose. And here I am now. Eat and drink what I want in small portions. So I snack more than eat big meals. On April 16th next year I will be 5 years since my surgery. Oh the only problem I have is with acid reflux. Tried everything but nothing helps. But hey I’m still here. Feel free to ask me anything. I had my surgery at Salford Royal in Manchester and I had my chemo at the Christie. Both hospitals were wonderful and I couldn’t fault them. 
regards

rob

  • Hi Rob,

    Firstly, a big well done on getting to this stage. That's pretty fantastic coming up 5 years and still going strong. I hope that'll be the case for my dad too. He was diagnosed with OC in March, had pre op FLOT, then surgery in July,  now currently half way through post op FLOT. It's hard for him no doubt about it, but his current dose of chemo has been reduced to 50% so hoping that helps alleviate some of the side effects. Dad has a jej tube in (which he also hates) but it's proved very necessary as his weight and eating continues to be an issue.

    I'm so sorry for the loss of your partner. It must have been so hard going through all that, to then be hit with your own health problems, and like you say, revisiting the hospital and places which held difficult memories.

    My dad is still adapting to a new eating routine, it's the eating little and often that he struggles with and he has lost a fair bit of weight ( he's already a slim build) Am sure he'll get there in time but it's a worry to see it happening. 

    Thanks for sharing your story though. It gives hope to us ( and I'm sure others too) that there are much more positive times to come. You mention acid reflux, and I know my dad takes Lansoprazole ( which he already took for years before) Not sure if that's something your GP could help with?

    Anyway, I wish you continued good health. Onwards and upwards. Take care, Claire

  • Hi Rob .Firstly I’m sorry to hear about your partner it must have been a very tough time for you

    It’s truly heartwarming to hear how well you’re doing ..Especially after everything you went through prior to your own illness .It’s always good to read  positive news ..I’ve just read your post to my husband and it’s given him a real boost and hope for the next four years .

    He too had  his surgery at Salford Royal in Dec ‘22 and his chemo at The Christie ..His surgeon was Mrs Farooq and his oncologist at The Christie was Dr Waddell … You are so right in saying they are both wonderful hospitals ..We can’t fault them either . 

    He has some issues with acid reflux too despite taking Lansoprazole twice a day ..We are just waiting for the biopsy results from a recent endoscopy. ..Nothing suspicious was seen but Oesophagitis  and gastritis were on the scope report so it’s probably an acid reflux related issue ( fingers crossed )

    Wishing you a continued happy healthy future .


    regards J 

  • Hi 

    Thanks for sharing and sorry to hear what you have been through but so good for this forum to hear from people several years post op.  This time last year I was in ICU following complications with my surgery but I got through that, had my post op chemo and recently went back to work.  I found out a colleague at works mum had her op 23 years ago and although still has to have a stretch every now and then copes well.

    my question is when you found dumping and diarrhoea settled down?  I struggle everyday with this, I do everything I have been advised to do with diet and drinking but nothing seems to help.  It really limits what I can do in a day and as a result I often miss meals just so I can leave the house.  I have spoken to various professionals about it but nothing I do stops it.

    any advice or insight would be great.

    thank you 

  • Did uou dver suffer with bad bile  like i have after opration  3 months ago 

    Nic nac

  • Yes I did and sometimes still do.  I take the medication like others have mentioned still but, touch wood, haven’t had a bad episode for a few months.  I do keep gaviscon by the bedside and some milky treats handed as I found these can all help when it happens.  

  • Hi Robert j. Your road is about the same as mine. I did have a blip in 2021 and had to have more chemo and radiotherapy but I’m still here now. Good luck to you. I still get reflux but in the 4 years I have had my first grandchild and life is so much better for that. All the best. 

  • You’ve just given me hope I thank you for that

  • Hi Rob I could have been reading my husbands story as identical to yours. My husband has not had post chemo as was too unwell following the surgery and drs felt it would do more home than good. I do worry about it returning though. My husband also had bowel tumour removed same time as OC, they only found it as had pet scan and it was very early.

    it’s very reassuring to read your story so thank you for sharing. 

    I am so sorry to read about your partner, you have been through a lot so best wishes to the next 5 years.