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 Ray

    your nurse should be able to sort you out a large see through stick on dressing i used them on my feed tube and showered no problem , you will be fine on the FLOT although on the treatment days you will be hungry due to the steroids a good tip is to take a stock of sugar free sweets with you and milk shakes , good luck and be patient.

     

  • 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

  • Oh that is such an awful state of affairs.

    mind you , it could have panned out much worse for us.

    Husband went to GP in the March with minor swallow probs and reflux , was put on omeprazole. After a month no improvement whatsoever. It was me that had to be the pain in forcing him to go back- lots of , how do I put this politely- persuasion- he would have been quite happy swilling the gaviscon. I think it was because of my ex nursing background, that something just didn't sit right.At that point the GP referred straight for an endoscopy and the rest as they say is history, and boy oh boy fast as lightning once the endoscopy came up as dodgy, 5 weeks until chemo started.

    i suppose I am quite the pain in the ar*e , but this time I am so glad I was.

    take care.

     

  • Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

  • So sorry for your loss. Absolutely hideous disease. Xxx

  • Hi .

    i did not receive post op FlOT as my tumour was downgraded to a T1 after the pathology and the initial chemo had destroyed the tumour and it was contained in an area less than 3cm i was however given the option but having lost 18kg and the excellent results  posts op  it was agreed it was not really beneficial , i cant fault my treatment and everyone is different , its all about what stage you are diagnosed at , i see my oncologist every month and i am in a very good place now , a bit early to say i am cured but all the feedback says yes , you take care of you and your family and god bless you all.

     

  • Best thoughts to those who are bereaved. What can one say. No words can be said that would make it any less painful.

    it seems to me that with this cancer there is a very very fine line between curative and palliative. More so than with any others ( I may well be wrong here) and it doesn't take a lot for it to tip over into palliative. In saying that though there is a very brave and stoic chap on here who is 7 years + into a stage 4 diagnosis.

     That was one of the first questions I asked the team. Told them- no flannel please, tells us what we are dealing with- and they did.

    doogreg- yours was an amazing response- down a whole stage from FLOT and that is incredibly positive.

    i am told, now it maybe urban legend, that only about 40% complete FLOT because it is so aggressive?

    i have to say 'cancer took my mum' we are not having the same experience with the hospital. Yours sounds awful, with lots of gaps in the treatment. How on earth can they not follow up on such a major operation- what were your mam's staging etc pre op. How much were you told. We have been told quite clearly, that the plan is curative BUT there are absolutely no guarantees. The nurse said " it only takes ONE rouge cell to upset the apple cart.

    so while we are optimistic, I think we are also reluctantly of course realistic.

  • Hi Hilts

     thanks for your comments as i said previously its all about the early diagnosis and the diagnosed staging as to the chances of containment , unfortunately i have met to many people who were already in  a metastasis situation which puts the risk of the cells spreading elsewhere much greater , my heart goes out to them as that is a different thing to deal with , only surgery and pathology can reveal the true situation , from what you have told me so far sounds positive if i can help you in any way with advice on anything connected with your husbands treatment please message me , take care and stay strong both of you.

  • Hi Everyone,

     

    This is horrible thing to have, my staging is stage T3 N2 hopefully the FLOT treatment will have the desired effect, to give me a chance to have an operation and followed by more FLOT,

     All you can do is keep positive, keep as fit as possible eat as much as possible (obviously heathy lol) and hope for the best.

  • Hi Ray

    Thats good   tumour less than 3cm no metastasis and only 2 lymph nodes i am sure you will get through the chemo and onto the operation no problem fingers crossed , keep in touch during your chemo and let us know how it is going , remember don,t be afraid to ask about anything you are concerned about , take care.