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.

  • Hi everyone and I hope you all had a lovely Christmas. 
    I have a question again, Martin has his pre op and fitness thingy on the 5th Jan ready for his total Gastrectomy on the 11th, I had a phone call today from the hospital, she told me the pre med is very in depth and would take about 5hr, can someone give me an idea of what will be done, I know the usual things but what's going to take 5hr? She said to go with him as there's lots to be taken in, I'm not that good at retaining info, I will write things down but getting a bit worried about it now. 
    That's it for now I think but I will be back ....

    Have a very happy New Year xx
     

  • Morning Sue and all,

    I hope you had the best Christmas possible.. Regarding pre op appointment I wasn't allowed to go in because of COVID restrictions. I was allowed to meet the surgeon and I was taken aback at how straight talking he was but that's what they seem to do. My husband had the fitness test a while before his pre med. Everyone seems to have had slightly different experiences/order in these standard procedures as it depends on the hospital and individual. Someone else may be able to give you more information Sending you and your husband our best wishes.

    Fingers crossed for a happy and healthy 2023

    Keeping the faith  for everyone 

    Milly

  • Morning Sue, hope you're well and your Xmas and New Year were OK.

    From memory, the overall time at the hospital was similar in length for my pre op stuff, but a lot of that is waiting around as you see 3 or 4 different people. 
     

    The longest part was the pre op fitness test with the bike and some other fitness checks. There were a few other meetings as well, one with someone for bloods etc, another with a CNS to talk through the op and another with someone that does all the pre surgery tasks with you like the anti bac body wash you have to use for a couple of days ahead of surgery.

    So, I don't think he'll be doing stuff solidly for 5 hours, I think that's the overall time you'll be there for but will see a few different peeps and a lot will be time spent waiting around between meetings ... so make sure your phone is charged, don't do Wordle before you get there and take a good book !

    In terms of things to ask I can't think of anything specific and the only prep I'd advise ahead of the op is to get some kids meals in from COOK and stock your freezer with them. They just made it so easy as only take 20mins to cook from frozen when needed, saves you a whole bunch of prep Sue, are healthy and nutritious and he can eat half, park it and then come back to the other half in 25+
    minutes. The Cottage and Shepherds Pie are really nice, they're soft and saucy too - so go down quite nicely.

    Hope it helps !

  • Thanks [@Redski]‍ for taking the time to answer, it's really nice to know people are around to help.

    As I'm sure you can guess I'm really worried, I've read a lot and scared the sh** out of my self, I've also read the prognosis isn't very good, with Mart not having chemo I guess that puts him in a less good position, I was told the hospital don't give it to people over 75 as doesn't work so well for them, I can't believe that's a get out clause for the hospital so will just have to put my faith in them. 
    Have to get tomorrow over with then on to the big one, I'm not going to be there for the op and feel guilty about that but we live 2hr away from the hospital and I can't drive, so he's staying in the hospital hotel over night instead of leaving at the crack of dawn to get there for 7am. I'll go visit two days later when I'm hoping he's recovered a bit.

    Yes the kids meals looks jut the thing so think I'll order some, is that what he'll be eating as soon as he's out of hospital or is it mushy stuff first. 
    Hello everyone one else, I hope you all had a great Christmas and New year. Good luck to us all for 2023 Take Care and sending hugs xx

  • Hi Sue,

    Try not to scare and worry yourself. As the wise BFG said to me pre op, this is the most routine major surgery they do and your man will be in good hands.

    A tip from my Wife would be to organise something to do on operation day. Get out, meet a friend, go and see someone, visit a family member and be out the house in company so you busy yourself. Sitting at home alone thinking about it all whilst he's in theatre isn't where you want to be !

    Being out and with others distracted will help !

  • Hi y'all

    Been MIA for a bit what with Xmas and school backs etc- so a spare moment.

    Andi-Hope things are moving on for you a bit- what was up?. Husband still got his hernia , they patched it up once, but bowel went a wondering again, so still there. Not speaking/seeing the Surgeon for a few weeks still - 6 month follow up this time, I guess I should be grearful he is now 'low priority' (: so, he will need it done again, reinforced with mesh thistime to stop the bu*ger wandering again. He had his Barium swallow in September which was disease free, but a 'kink' in the way the new plumbing is , well plumbed in, so might want to fix that too-BUT of course these are all now choice/non urgent- so we will see. He still coughs, due to aspiration, but not nearly as much- so plodding on I guess. As for your holiday- oh, what an absolute pain, BUT, get booking again as soon as.

    SueCC- yep, it is all very scary, but once you get going , it gets better. That pre op assessment thing, sounds like a long job, but it is lots of different things, like bike, ecg, etc. loads of bits n piece, so not on one particular test for 5 hours. The chemo thing- I might be talking hogwash here, but as I understand it chemo is 'less effective' in the 'older' ( sorry, wasn't sure how to be diplomatic) person as it is something to do with cell renewal, as you get older your cells don't replace themselves as fast as they do in the 'younger' person. and as chemo also duffs up healthy cells, I think the risks outweighs the benefits. Maybe wrong, but it is defo not an 'ageist' thing. 
    so hope y'all are chugging along and keeping the faith- even on these hot, summer, tropical nights!
    Hilts

  • Thanks Hilts, yes that's more or less what the surgeon told us about chemo but it's eased my mind somewhat to hear someone else say the same thing and you can say old, I'll take no offence haha.
    The pre op/fitness test went very well, he didn't  have to do the bike thingy just all the stuff you usual do for an operation, plus been told EVERYTHING that can go wrong, met with a few other hospital staff.  I'm glad that one's out the way now onto the big one.

    So I really want to thank Hilts, Redski and Milly for all the help you've given me and Im sure I'll be asking for more help after the op.

    Hilts It's good to know your husband is doing ok-ish and hope the hernia gets sorted soon.

    Andi I'm sure you'll get on holiday soon but getting well is more important at the moment.

    Redski I've just given Mart a kids meal for his dinner to see if he liked it, he said it wasn't bad so now I know what to sort out, that one was from Aldi though, but I guess there  more or les the same stuff.

    Thanks again Xxx

  • Well that's it, Martins left in a NHS car to take him to hospital hotel ready for his operation tomorrow, I'm obviously upset as can't go with him, hospital is over 2hr away and I can't drive.

    We haven't been told much along the way and we're dealing with 2 hospital, first we haven't got any stage/grade and find that unusual, second on the endoscopy it said the cancer was In the cardia and to me that's where the stomach and Oesophagus touch so why take all the stomach out as it said on his staging lap total Gastrectomy.I know you all may not know but your a bit more clued up than me. 
    I just feel so alone xx

  • Hi Sue !

    Try not to worry. When he wakes up from his operation tomorrow, they'll have removed all the bad stuff and you guys can take a breath and focus on a new start !

    So, my surgeon said to me he had two choices. Partial removal or whole. He went with whole to minimise chances of anything residual being left behind that at that point was too small to show up in the resolution of a scan.

    Mine was same as Martin's, at junction of oesophagus and stomach too.

    Try and not worry, I'm here a year and a half later post surgery and am sat with my eldest (21) having jacket potato with cheese and beans and a side salad with a Pepsi !

    Please keep us updated. Have you got anyone you can spend time with today and tomorrow to keep your mind off it and busy ?

  • I've had a phone call to say everything went well, they took his all stomach and a bit of his Osophagus out. I can now breath a bit but keeping everything crossed for the next couple of days. Thanks xx