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 sorry to jump in but my Dad has terminal stage 4 esophageal cancer that spread to his lungs, had 6 rounds of chemo (only option due to 2 ups & radiotherapy for mouth cancer 8 years ago) It shocked Doctors by blasting the 6cm tumour & large area on lungs into just bits but only a few weeks later it's growing back a lot faster than hoped..has this happened to anyone else? I think 8 is the max chemo he can get so there is 2 left? No word of them doing it though, next scan not till July? I'm out of my mind with worry & confused, I wish I could go to the appointments!! He is 66.

  • Hi Kazzakp,

    I'm very sorry to hear about your dad. It is a very difficult situation anytime but not being able to go to appointments makes it harder. I am not medically trained so I am unable to give advice but I have contacted Macmillan nurses and they have been helpful. I have been able to go to a couple of appointments with my husband so maybe you could ask if no one is going with him?

    I hope this helps a bit.

     

    Milly

     

     

     

  • Hi Hilts, yes you are correct - we are fortunate to be living in Spain and today we went for a walk on the beach and a coffee. We have also just booked golf for Tuesday - my Dad will try to walk the course as he is still fit and strong. 

    It's amazing that only when a huge tragedy occurs do we realise how meaningless many things are that we all put importance to...and really we shouldn't waste a second being bothered about these things. You are very right..we should all enjoy the time right now. 

    Lee

  • Kazzap- Never apologise, and you are not jumping in, this is public board, where fellow travellers have happened to find each other. So welcome!
    What can I say to you.  There are a growing pile in this Oesophageal cancer club, all at various stages of diagnosis & treatment. I said earlier ( I post a lot - if something is on my mind, it gets on here pdq) it is often worse for the onlooker. Your Dad will be in charge of his information and of course what he shares with family and because of patient confidentiality and data protection laws, the hospital team won't share anything.My Dad, when he had prostate cancer 15 yrs ago was very conservative with what he told us, used to drive me MAD(:. Used to say things like 'oh, forgot to say, appointment tomorrow' type stuff, and of course My Dad was totally in charge of deciding what treatment he wanted and more importantly what he didn't want....

    There will be some sort of team around your Dad, with some nurses attached, they are very good at picking up the confused relatives (:.also Maggies ( chairity attached to many cancer units) they are very good to go to when in meltdown.

    As Millie has said there is McMillan who deal with this sort of stuff all the time, so maybe give them a call.

    None of us on here are medics ( that I know of LOL) and only know what we do through travelling this crazy rollercoaster, so feel free to spill.

    Millie- You have had some really horrible times with bereavement and you know as well as anyone that we that are left have to go on. Your road trip rang a tune with me as a friend in work a few years ago , got an absolutely awful diagnosis of stage 4 ovarian & Bowel, they couldn't decide which was the primary. She 'retired on I'll health' and we all thought that was pretty much it.......fast forward 5 years, and she is still here- found a clinical trial that seriously worked, PET scan showing no active disease. Incredible stuff, just before Covid kicked off she had completed a road trip around the US!! and has already done Europe!! What a cracking bird (:

    Lee- enjoy your golf round tomorrow. My Dad is golf mad, he is out in all weathers!. Iit is way too cold here at the mo here  for me- a total lizard who loves soaking up the heat! A north wind that just won't go away, mind saying that once it does go away, it will be rain all the way

    OMG- I can't half blather on (: !

     

  • Thanks Hilts...we'll do our best!

    Lee

  • Thinking of you today Millie58,

    Get 'slashing'

    i have been doing some 'therapeutic ' sorting. The old vynil in the loft! Supposed to be sorting it LOL. My kids have nicked the Nirvana, Bleach blares out (:. Spending good time completely wasting it. 

  • Thinking of you too, Milly58. 

    Unfortunately there was no signal getting the FLOT and the wifi doesn't allow connection to this website.

    And I have to say it.

    May the 4th be with you.

    And Hilts - good luck with the vinyl!  We've an old 1960 jukebox that has kept us entertained for years and about a 1000 45's that needs sorting through!

    Cheers all

    bfg

  • LOL- nice to have you back BFG, 

    indeed - may the 4th be with Millie (:

    What is it about vinyl? The music sounds so much more 'real'. My kids are really getting  into it.

    When CD's first came out it was WOW, no scratching, jumping, convenient, no tape spooling da de dah,of course we now know 'not true' . CD's just doesn't'feel ' the same.

    How are you anyway BFG. Started the next FLOT yet? Last hurdle, then DONE.

    Mine goes back to work next week !!!!!! See how he gets on TBH I think it will do him wonders he's had nothing else to think about for the last 9 months apart from cancer, he needs a distraction now and 'getting back out there'. Distraction certainly kept me going (:

    Daisy and Ray- where are you?
    Keeping the faith

    HILTS

     

     

  • Hi Hilts

    FLOT started this morning - so far, so good.

    Some of the best sounding music on our juke comes from original vinyl from the last 50's - later music comes no where near it. 

    I'm fortunate to have started a contract wfh a year ago now and since diagnosis and treatment over the past 6 months, they have been incredible patient and flexible and have just been extended another 6 months (I restarted working 4 days a week s month ago).

  • Hi Hilts, BFG and all,

    I received a call from the surgeon just after 5 to say my husband's op had gone according to plan which is really good news. He's now in ICU. Thanks for the messages of support and I'm pleased the first FLOT has gone well BFG. Also great news re your husband Hilts - another step forward. 

    Keeping the faith 

    Milly