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 Scott – post op, they are ultra cautious and will keep a very close eye on things – I hope your dad is improving now.

  • Hi Lee – it’s back to baby steps, but his steps look like they are following mine and there will be incremental improvements.  I too was in surgery for longer than expected (I think I mentioned on one of the threads, as it was quite funny (but not at the time)).  My memory was arriving in ICU post op to have a phone thrust in my face to tell the missus that I was still alive. 

  • Hi distraught – great news on the PET scan.  It all sounds very similar to my results.  He’ll probably have a laproscopy booked in too as a final, final, check and then you will move over to the oncology team for the first round of FLOT.  Assuming things haven’t changed with the “gold standard” for treating this, it will be 4 cycles 2 weeks apart, about 6 weeks past the last cycle for surgery, and then the final 4 cycles starting 6 weeks post op.   The support teams are phenomenal – and they will probably scare the proverbial out of you with all of the possible side effects, and to be honest I would say that those of us who have been through it on this chat have had almost the full range of possibilities between us, which is not meant to worry you – but just to say that we all react differently and with varying degrees across the symptom range.  It’s a case of buckling up for the ride with the first one being the worst – primarily because you’ve no idea what’s coming and his mind will be working overtime.  Keep the fluid levels to flush the stuff out the system, and take the medication they offer.  Talk to the team about any side effects (most of the medication they give you acts as a buffer for the worst of it) as they can tweak things around.  And don’t forget to ask away here too- I’m sure we’ll help where we can.

  • Hi hopingforhope86 – there should be an upper gi team who (you may need your mums permission) you can contact on anything related to timescales.  But your MDT will be “weekly” so often it depends on when you’ve had the scan as to when they discuss the results and get back to you with the next steps.  And as Hilts says – any high fat, sugar type food – this is not the time for “healthy” eating. 

  • Hi BFG

    Thank you so much for your reply. I start minced and moist tonight - even the name !!!!!!! Bad day today as told I will be here AT LEAST another week - I so want to go home. The 'up' side is I've gone all day without oxygen and still over 94%. They are making me keep it in over night - but hopefully nearly gone. How are you coping - are you eating OK  - how was the second round of chemo?? 

    At the moment I feel as if this will never end - 9 weeks so far - just depressing!  Anyway - must put my 'feed' on - another one of the joys. Apologies if not an up beat message - feeling very down today - as you say - good days and bad days!! 
     

    Andi x

  • Hi Andi- are you kidding. I challenge anyone to be upbeat on the minced and moist. The best thing is that's its the sign of massive progression and brings you closer to going home. 

    There is no doubt that the relationship with food changes, but nothing is off limits now - big 3 course meals are out,  but that's about it. 

    2nd round of flot was pretty much the same side effects as the first but tended to last a little bit longer - so 4 days of being a GOG (grumpy old git) rather than 3. How did you get on with your first round?

  • Hi everyone- update:

    Andi - sounds good news as though you're steadily going in the right direction, keep at it.

    Ok...my Dad has has 2 leaks post OP- 1 leak the following day and 1cleak a couple of days ago. This morning he was sent to the endoscopy department to have a clip inserted in his reconstructed esophagus to stop the leak. The docs said 1 hour and then back on the ward. 3 hours later we was told that Dad was in intensive care again due to his heartbeat being very high. I have just been back to hospital and he is ok but very weak and p***** off!.

    The nurses have said the doc/surgeon will decide what will happen tomorrow. Just as we were feeling positive as he was taken to the ward...he's back in icu. I guess this is the 'rollercoaster ' journey. 

  • Hi - after the first chemo I thought it was a breeze - then reality kicked in. The third was postponed a week because I was so ill - it really knocked me out - so dreading it. I should have been nearly through it but won't be until next year now. Ottawa very long journey xx

  • Ah thanks for the info bfg :) Got her some morphine and supplements from the GP, all the good stuff so hopefully that can keep her going for the next couple of weeks while we wait for some action 

  • Hi Leechap

    So sorry to hear about your dad - it's just awful when you think things are going well - it seems to be 2 steps forward and 3 back. I just feel institutionalised - they say at least another week here but every day is like a week. 
     

    hooe all goes well with your dad tomorrow 

    Andi xx