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 Milly

    You were spot on. :-)  they have a fantastic permanent outdoor conservatory now with removable side panels during summer.  Do let us know when you and hubby are down. 

    Tabnabs - it's always the trouble when I take so long to reply, the world moves on and I'm glad that your procedure went well. The subject of wind and chemo is funnily documented over the web as something that isn't really mentioned as a side effect. Peeling wallpaper,  beezlebum and being unable to blame the dog for that one.... are some of the comments.

     

     Cheers all

    Bfg

     

  • Bfg, have to say that isn't so bad this time round as it was with the first lot of chemo, could have inflated a small airship then!
    Hilts, that's really interesting about PET scans, always wondered

    Thanks everyone for good wishes

    keeping the faith

  • Hi all

    Yes , Tabnabs- I knew absolutely zero about PET scan before this, but my chemist of a husband felt he had to describe in fine detail the whole thing(:

    They inject you with radioactive glucose, let is find its way around the body for a bit.

    Cancer cells LOVE sugar, so they really love to absorb masses of the glowing glucose (:, shove said person in scanner and watch the little ba* rds glow., BUT , and there is always one, even though microscopic cells will soak it up, they are too small to be seen on imaging. So any 'tumours' have to be over a certain size. I might be talking rot, but that is how I am understanding it. Amazing bit of kit really(:

    Yes, Millie we've been out all day, not in the sports car (:, but on the river - not in it for a change. Sailing- soundS glam - er no, just one of those inflatable boats that you can buy from a major sports shop beginning with D and just drifted down river, once had enough, deflated it and go the bus home (:

    Now just poleaxed on the sofa (:

    keeping the faith

    hilts

  • Hi all, just at the start of this OC journey, lost my dad nearly 10 years ago to this awful disease. Not quite ready to share yet as still trying to wrap my head around it all, but have spent the day reading this chat and am inspired, in awe, and feeling comforted.

    please forgive me for not sharing more x

  • Hi Bee-Q

    Welcome!

    I haven't been on here long myself but I have to say what an awesome group this is, really supportive and very welcoming. 
    take your time to absorb the news, and share when you're ready,

    it's a really tough time for you, but we all understand and have been through the mill one way or another.

    keep the faith

    Tabnabs x

  • Hi Bee_Q and welcome. 

    I can only reiterate what Tabnabs has said - this is a place where you can find very useful and encouraging info that can help you in your journey through this horrible illness- stay strong and believe that each year that passes better, more advanced medication is found and used to fight this cancer.

    Good luck 

    Lee

  • Hi Bee-q

    A huge welcome to the now legendary oesophageal cancer club board.

    You share as much or as little as you like. The good and or the bad. No rules ( apart from the site ones)

    None of us are medics on here, just fellow travellers on the rollercoaster ride that is OC. I suppose we might even say 'living the dream' I love vomit worthy cliches.

    We all on here, I think it would be fair to say, have found each other amazingly helpful. We thrive in anonymity. Although I am starting to suspect we all know each other! So many 'coincidences' (: what's been so 'therapeutic' is we all 'get it' and when one of us has had a bad day, we can all truly understand how the other feels.

    We - my husband is the 'victim' me = the chatterbox, are just out the other side (for now- eke). Visable disease free a year almost to the day of 'that endoscopy'. 7 months post op and 4 months post last chemo. We still look at each other and say WTF just happened. Surreal doesn't even come close. He was 56 at the time of diagnosis, expecting maybe an ulcer or two giving him upper gut rot, Long history of reflux, never expected this.

    You are probably extra stunned and 'twitchy' having lost your Dad to this, one or 2 on here that it has happened to.

    The physical is one thing , but the emotional stuff is a bigger beast altogether.

    Hope you keep retuning and sharing as much or as little as you like. I am a great big 'spiller', share most things. It is weird that I find sharing so therapeutic; almost a way of ' processing' everything , making sense of the spaghetti that are my thoughts.

    Anyhows

    always keep the faith

    Hilts

  • do you know what a plo is in an operation? 

    would be grateful if you have any idea

     

    sorry to hear about your diagnosis x

  • Welcome Bee_Q and Chrissy 

    We are a friendly, helpful and supportive OC group. I, like Hilts, am the concerned wife! I've been 'Head of Research' but be careful on that one! My husband is on a 'need to know' path. Probably the better path to take! Lots of sites have out of date statistics and are a scary read.

    No pressure on sharing. I 'stalked' this chat until I felt ready to join. Some post more frequently than others and that's what's so good, share as much or as little as you like. We are here and as it's been said we aren't medics and everyone is unique. We have each had different experiences but we will answer questions that we feel able to.

    If you've read the posts you will have a general idea of our journeys. My husband was diagnosed at the end of October aged 62  - a complete shock. He is still on the pathway and has an appointment with oncologist this Wed. Unfortunately he has had a few deviations - it's been like snakes and ladders! However hopefully he is back on the right path again! 

    Chrissy - not sure what plo means but the cancer team or your doctor may help? 

    Keeping the faith

    Milly
     

     

     

  • Hi chrissycleverclogs 

    so  the term PLO refers to ,Pharyngo Laryngo Oesophagectomy this is probably the main part of the operation  , i am  somewhat bemused by your other comment as i am as i have previously reported as close to 100% cancer free as can be determined one year post operative , unless you know different lol take care and keep us posted on your progress , remember we as a group are always here to help and support each other through all stages 

    Regards

    Douglas