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 Rayb

    just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

    It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

  • 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

  • Thanks Milly...I'll remember the walk and lunch with my Mum on the day, good advice. 

    Lee

  • Hi Bfg

     

    What a coincidence! My wife Elaines, breast nurse mentioned that it`s quite common for cancer to happen in the same household. Stress/worry, makes you wonder. Definitley better letting the rest of your family know about your hitched status. Congratulations to you both

    Hi Milly

     

    Really pleased the CT scan was clear. Yes some sort of normality is definitley the key and making the best of what you have got.

     

    Hi SallyR

    I`m glad you and others are finding this forum, as they say its great to talk. It help me a great deal.

     

    Hi Hilts

    I have missed being on here. Cancer defintley seems to be on the up, me and the wife have just watched the Dark Waters on Netflix and it really makes you think. I wonder what your husbands take on it is, worth a watch ?Well I never knew about the Gallstone until after the op, but from conversations with the upper GI nurse and the consultant they thought I did. Hopefully it can be removed. Fingers craossed the husbands op goes without hitch. Oh yes Flu and Covid booster to look forward to Not LOL.

     

    Hi Lee

    Fingers crossed your dads operation goes to plan.

     

     

    Keeping the faith

     

     

     

     

  • hi Lee, 

    From just reading your post, sounds like the surgeons think that your Dad is a 'very good case', they seem really really realistic and positive. Sounds like what most of us have heard pre op "we'll  chop out all we can, but no guarantees "  we were told that, and if they couldn't get it all, they would blast the rest with chemo. I think what I can say for defo is that they wouldn't even be doing it unless they thought he was ' a good bet'. Most of us on here , I think, only knew they got the lot after the histology came back 4-6 weeks after the chop. Most of 'us' also had post op chemo , regardless of histology, just to finish of any little *** that we're still hanging around (: So millions of fingers x emojis 

    RayB- yes , you were VERY MUCH missed. Yep, get rid of the gallbladder if you can, honestly, after what you've been through it would be like pinching your finger !!! All keyhole, out same day.(: I would never have 'passed' mine naturally (closest thing to child birth apparently! ) too big! . I'll mention programme to husband. We are watching one of the most childish, hilarious, inappropriate' drama's on Netflix at the mo. A 'spoof mocumentary' American Vandal. I've had a abdo pain after laughing so much!

    Anyhows 

    keep keeping the faith

    Hilts

  • Thanks Hilts, nice to hear encouraging support. We have some family arriving from the UK tomorrow (first time since start of covid) so it'll be a nice few days catching up and trying to explain the emotional rollercoaster we've been on...and are still riding!

    Thanks 

    Lee 

  • Hello All,

    I have been following you all for some time now and firstly I would like to thank you all for sharing your stories. It really has helped me since my dad was diagnosed with OC back in early spring! As most of you have said on here, receiving the initial diagnosis and spending every spare minute googling was the worst thing I could have done. Until I came across you lovely lot and you really put my mind at ease! 
    Dad was given the plan of FLOT, Op,FLOT and no spread or in lymph nodes which was amazing!. He really took the first lot of FLOT in his stride despite it being delayed for a week. Last week he was due to get his op, what an emotional day that was. However while under his oxygen levels dropped and the doc decided to stop before deflating his lung. He's now had some respiratory assessments which he seems to have managed no bother. Fingers crossed this is just our dip in this rollercoaster of OC (I feel like I even talk in your jargon haha) but has anyone else had to go through respiratory assessment? 

  • Hi Scott

    If it's the one where you have a respiratory device that measures oxygen levels,  ecg monitors for the heart and put onto an exercise bike that increasingly stresses the body - then yes, but I thought that was pretty routine before the op as like you said,  they deflate one of the lungs and at about 6 - 8 hours is pretty gruelling. 

    They should get him sorted out soon,  and if you have any questions then please shout. 

    Cheers

    Bfg

  • Hi RayB.   We have seen Dark Waters.  Yes what a shocking film, especially as it's based on real events.  Certainly worrying.   Shows how powerless the world is really up against big chemo/pharma

  • Hi Scott,

    Welcome to 'the club'. As Bfg said my husband had pre op assessment on bike with mask etc which he passed with flying colours! If you've read this thread you will know my husbands op went really well but he had post op complications which resulted in respiratory problems in his left lung (not the one which was collapsed) and another emergency op. All sorted now fingers crossed (it's a jinx thing lol). 
    They are obviously being careful and hopefully if the assessment has gone well he will have the operation. Any others questions as we all say feel free to ask. To give you hope we have just booked a holiday to Tenerife in January so fingers crossed again lol.

    keeping the faith (blame or in my case thank Hilts for this one)

    Milly

  • Hey Sally and all,

    How's your husband doing? Kev has had some episodes of the dreaded dumping but not too much and it can be attributed to what/ how much he has eaten. So continuing to learn. Has anyone got the Oesophageal Patients Society card re eating in restaurant ie, smaller meals due to medical requirements and the 'urgent loo card' who knew! Also we are looking into getting the radar key for disabled toilets has anyone asked for one?  I do think it would help many people,not just OC patients,if restaurants automatically did a small plate as asking for a 'child's meal' can be embarrassing and let's face it is usually limited to something and chips! 

    I don't think I'm going to watch Dark Waters - had enough of the 'Dark Clouds' this last year! Lol.

    Anyway keeping the faith

    Milly

  • Hi Milly, yes wise not to watch Dark Waters!   That's so good Kev is getting along well and not too many dumping episodes.   My husband is gradually getting better.   The crashing after eating is not so bad now.  He used to be out of it for 2 and a half hours after eating anything, so strange.   He is trying to stick to eating things he knows are "safe" for him and high in nutrients, like variety of nuts, biltong, soup.  Alcohol is not a problem at all and even seems to help??   The neuropathy from the chemo definitely affected him internally and this is all gradually wearing off now.

    what a great idea a holiday to Tenerife next January, something to look forward to.   We r in the process of buying a house.   Maybe not such a great idea for stress levels!!
    keeping the faith for you Milly and everyone,

    SallyX

Reply
  • Hi Milly, yes wise not to watch Dark Waters!   That's so good Kev is getting along well and not too many dumping episodes.   My husband is gradually getting better.   The crashing after eating is not so bad now.  He used to be out of it for 2 and a half hours after eating anything, so strange.   He is trying to stick to eating things he knows are "safe" for him and high in nutrients, like variety of nuts, biltong, soup.  Alcohol is not a problem at all and even seems to help??   The neuropathy from the chemo definitely affected him internally and this is all gradually wearing off now.

    what a great idea a holiday to Tenerife next January, something to look forward to.   We r in the process of buying a house.   Maybe not such a great idea for stress levels!!
    keeping the faith for you Milly and everyone,

    SallyX

Children
  • Hi Sally,

    My husband suffered both times with neuropathy but definitely worse in the second post op cycle. I never and I don't think he did either, thought about it affecting internally in that way. He has had more post nasal drip (yuk) but it does seem to be getting better. Strangely a beer or fizzy drink before food definitely seems to help. Good job we are all inclusive lol. 

    Hopd your house move goes smoothly and it will be good to have a fresh start in a new home.

    keeping the faith for everyone 

    Milly