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.

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  • 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 Tipo

    i couldn't agree more - this site has been SOOOOO helpful - everyone so positive. I'm sure your oncologist will soon be in touch re post op FLOT. I was in hospital for 10 weeks and it's now too late for the chemo. I would have had it if offered as of the 30 LN removed - 5 were affected. But I'm sure they got them all. I can just about walk a kilometre - trying hard to improve but my lungs are not good - need to be able to walk to the relevant 'gate' at the airport when I finally book a holiday!!!!! 
     

    Keep the tips and ideas coming - and keep walking

    Andi xxx

  • Hi we are in similar position. Our son who is 37 diagnosed with oesophagus cancer. Just finished 4 rounds  of flot chemotherapy and had ct scan now told it has spread to his spine but they think it may have been there all along but didn't show on the pet scan. They now say can't operate on the oesophagus even though it has shrunk. Now looking at palliative care. Absolutely devastated. 

  • Hi meltra44,

    I'm sure being devastated doesn't cover it as it must be such a shock for your son, you and your family. 
    As I have learnt Palliative care isn't end of life. It is about controlling the cancer. There are folks on this link that know more about this than I do but there are patients who have lived with the disease or found the treatment has stopped it. The upper GI nurses are a great help and Macmillan nurses were a great help to me too. No one can tell you how to feel but talking to someone who has more understanding of your situation does help. Others on here have used Maggies who are attached to some hospitals. 

    Also Cancer research have nurses too who will help you. We on here are not medical experts and all have different experiences of a similar diagnosis at various stages. Ask any questions and we all try and help.

    keeping the faith for everyone 

    Milly

     

  • Hi milly,

    yes you're right feel so helpless and it's still sinking in I think. The spread to his spine was so unexpected as no sign of it on the pet scan before chemo was started. The surgeon is baffled by it as surgery date was all set for the op on his oesophagus,  this is no longer an option so waiting to hear what the next step will be. Suggestion of maybe a clinical trial so will wait and see. So good to actually talk to someone who knows what I'm talking about

  • Hi all,

    I feel I need to express our thoughts are with all the Ukrainian people and those who are fighting their own battle with cancer in this terrible situation. 
     

    keeping the faith for everyone 

    Milly

  • Yes, an awful situation for innocent people...I keep saying things can't get any worse for the last 2 yrs...but somehow they do 

  • Hi everyone,

    Just checking in after a week away in Yorkshire for my husbands 64th birthday. Our family came too so very special after all he has been through. He managed a few pints Hilts! How is your husband doing? Hopefully the cough is no longer such a problem after  'the stretch'! 

    Lee I hope you and your dad and family are able to enjoy the sunshine and the pesky kidney stones have passed.

    I think of everyone often and I hope reading some positive outcomes helps those on this path.

    keeping the faith for everyone 

    Milly

     

  • Hi Milly !

    Happy 64th Birthday to Mr Milly !

    Sounds like a lovely celebration and must've been really special having everyone together after everything everyone's been through with lockdowns, covid and the roller coaster !

     

  • Hi Milly, good to hear you've had a good break.

    Unfortunately we have bad news. After a few weeks of my Dad constantly trying to be sick (only phlegm coming up) and not able to eat or really drink (except ice cubes), we ended up in emergencies a 4 times. The last time the CT scan showed although Dad has kidney stones, a new large tumor is causing the obstruction and this is the reason for not being able to swallow and constantly trying to vomit.

    Worse than this, the oncologist has now said there's nothing more they can do and have said Dad is best being kept 8n hospital and we are looking at weeks.

    Completely distraught and feel like we've all been ripped apart from the inside out.

    This last 2 years has been worse than a nightmare.

    My Dad is now on morphine so Al least he isn't in any pain.

    Lee

  • Dear Lee

    i truly am so very sorry to hear this devastating news. Your dad, you and your family have been through so much this last two years.

    Just writing about your dad's situation must be so very difficult. My heart goes out to you all. Having lost my mum who was 51 to cancer I can empathise but no one truly understands how another person feels at such times. I hope you and your family have support too. We,in this group, are here for you even though we haven't met I feel I know you and care about you, your dad and family. 

    still keeping the faith for you all in extremely difficult times 

    Milly  
     

     

Reply
  • Dear Lee

    i truly am so very sorry to hear this devastating news. Your dad, you and your family have been through so much this last two years.

    Just writing about your dad's situation must be so very difficult. My heart goes out to you all. Having lost my mum who was 51 to cancer I can empathise but no one truly understands how another person feels at such times. I hope you and your family have support too. We,in this group, are here for you even though we haven't met I feel I know you and care about you, your dad and family. 

    still keeping the faith for you all in extremely difficult times 

    Milly  
     

     

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