osophagus cancer diagnosis

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

Parents
  • Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

  • Hi

     

    I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

     

    Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

  • Hi Milly, that sure sucks after what your husbands been through, yes I've read all 80 pages and seem to know you all. Looks like both our husbands have thing done on Tue, fingers crossed for them.

    Was the market busy? last time we went it was packed.

    How do you all manage to get travel insurance? We should have been on holiday now, I didn't have to cancel it as Doncaster Airport shut down and tui just refunded. I think insurance will cost a fortune, Martin will be 80, Kidney cance, Lymphoma cancer and now this (whatever it's called) I have bladder cancer (10 years clear)  so not much chance of traveling abroad.

    Hilts we live in Louth it's ok better than a lot of places I guess.

    [@Andi1947]‍  I really hope you get to Tenerife, that's where we should be now, I have everything crossed for you. 
    Good luck everyone x

  • Hi Sue,

    Yes you do feel as if you get to know people on this forum and you know their darkness moments as well as their good news. If the routine test hadn't been sent we wouldn't be worried as my husband is doing really well. The sample has tested positive for blood but he can't see anything. Just got to wait and hope everything is Ok. Re your husbands laparoscopy it is an operation and I read were it's better to not lie on your side for a few days after the operation  due to the gas they pump into you. My husband did this and didn't seem to have the pain some people seem to report. I hope you get the answers that you want. Everything crossed for them  both. It does sound like they are quick. 

    Re travel insurance my husband is 64 and is over a year post treatment so he was able to get insurance obviously he had to pay more but he got it. 

    The Christmas market wasn't too busy but we did leave at 3 o clock so probably busier later on.

    Keeping  the faith for everyone 

    Milly

     


     

     


     

     


     

     

  • Thanks Milly, yes an operation and thanks for the info.

    My Grandson had a colonoscopy last week and was told if the stuff tastes awful to use a straw instead of drinking it. He said he didn't know how much S**t he had in him. Hope your husbands ok with only having a small stomach, they must obviously know what their asking him to do. Good luck x

  • Thanks Sue - we've got some straws so I'll suggest he uses them!

    keeping the faith

    Milly
     

     

  • Howdee y'all

    Now Andi 47, I would never encourage or even condone bad behaviour on this site- BUT the holiday to Tenerife- I know what I would do (wink wink emoji). Sometimes you have to live on the wild side (:

    Millie- as ever thinking of you and absolutely keeping that faith xx

    Sue CC- Holiday insurance? We managed to get it through saga, BUT it was AFTEr the job had been done. I have spotted on this site before now, people who have got it - I thik McMillan website maybe has stuff, or just do a search for 'chronic disease insurance' 

    ALways keeping the faith

    Hilts x

  • Hi Hilts 

    I agree - I'll be soooooo healthy on 29 - he won't dare say no !!

    Andi xx

  • That's the spirit xx

    Like we say in this house

    "Make him an offer he can't refuse" - sorry I watch too many films (:

    onwards with that faith

    xx

    Hilts

  • Mmmm - the mind boggles heehee xx

  • LoL

    The godfather - when the horses' head is put in the bed ! (:

Reply Children
  • Hi again [@Hilts]‍ , [@Milly58]‍ and all you good people.

    Well we went to see the surgeon today, well his understudy and was told he has 2 years to live without the operation by using chemo / radiotherapy.

    If he can have the oparation it'll be tough. He won't be having chemo before or after because of his age 79. He has his staging laparoscopic tomorrow and IF there's no scar tissue from having his kidney out 4 years ago . IF the Limphoma surgeon says his radiotherapy can wait a few months and IF there's no spread he can have the operation at Notts, (has anyone had it there) 

    So tomorrow it's a day at Lincoln hospital for staging.

    At the moment I'm just numb and really hoping for some reassurance from  you all and what do you think about the operation and no chemo providing it can go ahead.

    Thanks xx

  • Hi Sue, Hilts, Andi and everyone,

    Sue - We on here know what uncertainty and the feeling of being overwhelmed  feels like so all your feelings are to be expected. Re chemo - every patient is different and it could be that the tumour is small enough to operate on without it. What I think we'd all say is that they don't do this operation lightly as it's a big one so your husband must be pretty fit at 79 to be considered for it. The good thing is you appear to be on a fast track as the waiting is  just awful. Some on here didn't have post op chemo as either they didn't need it or weren't offered it for various reasons. Everyone is treated as an individual. I hope you have some good news today. Re Hospital there are two in Nottingham. I know on this forum understandably they don't allow you to say which hospital treated you. 

    Everyone thanks for your good wishes for my husbands procedure today. Great news - no cancer but found 3 small polyps which were removed but they don't believe they are pre cancerous. Absolutely relieved doesn't cover it. My husband was so good at keeping calm, taking the medicine and getting it done. No sedation so I'm now off out with ex work colleagues later (which I had cancelled) as I wanted to make sure Kev was OK. He's now having a lie down as he was up at 4 am to drink the galopy mixture. 
    Again this forum helped me to sound off as we didn't tell anyone.  We did tell our sons he was going for a colonoscopy but not until 2 days before as we didn't want them worrying. 

    keeping the faith for everyone 

    Milly

  • Millie

    yyyyyyaaaaaaayyyyyyy xxxxxx

    i am soooooo pleased for you ( and Kev of course) I hope he 'enjoyed' his bowel prep- frankly a hideous idea (: and experience- I remember it from back in my nursing days - Sunday evening was pre op night ergo bowel prep night! Back then the whole ward was given it !  I think I would say it always worked well LOL.

    Time for another amazing holiday for you I think xx

    Keep keeping that faith and onward 

    Hilts x

  • Amazing news Milly, fantastic for Kev and yourself and you deserve that night out tonight ... whilst he deserves the lie down on the sofa watching the football !

     

  • Hi all,

    Thanks and yes Hilts Caribbean in January! 

    Still keeping the faith for everyone 

    Milly

  • Caribbean sounds amazing Milly and much deserved !

    We are off to Cyprus for Xmas with the In Laws.

    They emigrated there 8 years ago and I haven't seen them in 3 years now because of covid initially, then my treatment last year and being immunosuppressed ... so, it's my first holiday and time away abroad for 3 years - am really looking forward to it now.

  • Fabulous Redski a well deserved holiday for you all too! Have a wonderful time!

    keeping the faith

    Milly

     

  • Hi everyone, my husband had his staging lap on the 6th Dec, we never see the surgeon after so I'm guessing it goes to the MDT meeting, hopefully get to know by the end of next week. 
    Today we received a pamphlet about the procedure, it really scared me.

    What other tests will he have to have, he's had CT, PET plus staging lap. Does he have to have a fitness test or things like that.
    If you remember it was found through his yearly CT scan for his kidney cancer, also at the same time they found he has Non Hoskins Lymphnoma.

    Its good to talk to anyone who's been through it and come out the other side.

    Im getting ahead now but the cooking when he comes home is reall worrying me, in fact I'm so so scared xxx

  • Hi Sue,

    Firstly, yes it is very scary BUT there are quite a lot on here who have come out the other side. 

    I don't think you do see the surgeon until you are actually being offered the operation. Yes MDT meetings we had to wait for a lot of them and it is very difficult. Yes I think everyone had the Fitness test. My husband was diagnosed at the end of October 2020 and started Chemotherapy end of January 2021 met the surgeon mid April and the Oesophagectomy on 4th May 2021 so a long time! 

    Re food most on here had similar initial feeding post op but again not all the same. My husband didn't have any night feeds and had a Jeg when in hospital but never used it at home. He was in hospital longer than most.  Others had a Jeg before the operation and used it at home after for a while too.

    The best advice I had although not easy to do is to take it a day at a time and at times it was an hour at a time. The waiting is awful - and as you know we've had a bit of that again recently. You have a dietitian to help you and the upper GI team we had were excellent. 
    I hope it helps to know that we on here 'get it'. Try not to Google and ask the experts at each stage. 

    keeping the faith 

    Milly 

  • Thanks Milly, I'm still scared but the infos very helpful. Xx