Hi everybody, just joined the club. I was diagnosed following an endoscopy 4 weeks ago. Since then I've had CT, PET, Ultra sound endoscopies, ECG and breath tests etc.
They have staged me at 2 with some 3 at the bottom. I have been informed I have to have chemotherapy first and then Surgery. I am seeing the surgeons on friday with a view to a laproscopy next monday.I have not spoken to the oncologist yet.
Having been told that the scans appeared to show no spread I was feelling confident I could beat this but the surgeons UGI nurse, who arranged for me to speak to the surgeon, did tell me that only 1 in 3 make it to 5 years so am now very deflated.
Any words of wisdom?
Written by
Phil5
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This might be an exclusive club, which is also trying hard not to get people to qualify, but you are very welcome all the same!
The answer is not to take any notice of the statistics. A few weeks ago we had a room full of people, some of whom had had this treatment, 5, 10, 15 and even 28 years ago! People have the surgery according to their condition and general health, sometimes in their 80s and get on OK.
There is only one statistic that applies to you. You will either recover from it - or you won't. It sounds very bald and uncompromising, but if your medical team are backing you and giving you the operation, it means that you have as much chance as anybody else, and better than most, of the aspiration of being in a room like that in the future, holding up your hand and showing new patients that you had the surgery umpteen years ago.
The other side of the statistics is that they are based on overall averages. They tend not to take much account of the stage at which people are diagnosed, their age and general health etc. I think it is a bit like trying to predict whether England will reach the knock out stages of Euro 2012. We can sometimes surprise ourselves!
Don't expect to be cheerful about it, but you can try and develop a bit of experience at positive thinking. Try and keep up, more or less, with what is happening with your treatment, but do not become too obsessive about the details. Try and retain what strength and peace of mind you can about your situation, and use whatever strength and support you can from available family and/or friends and loved ones. You won't be able to shield each other from your respective niggles and worries, but, and this is easier said than done, it does help if you can share your anxieties.
There is an emotional side to all this as well - and telling others about it is not easy because they react in odd ways. You will accumulate some horror stories and hopefully learn to laugh about them. So gather your strength and come to terms about it as best you can, and then take what opportunities to tell others as it appears appropriate and when you are ready. People often find unexpected treasure troves of support from the least expected places.
Thanks AlanM. I do appreciate your words. I will try to be more positive as you suggest. Hopefully I will be able to attend a meeting such as the one you mention and put my hand up. Thanks again for you comments.
sorry you are here my friend! It is such a shock when all this happens and can take ages to come to terms and find a way of dealing with it, physically and mentally. I think what Alan has said is brilliant and really hope it helps you at this tough time. Wonderfully put Alan! There are lots of us on this site and I know everyone will offer you as much support and advice as they can. You will have good days and bad ones Phil, we all do, go gently with yourself. We will all be rooting for you.
I can only echo what Alan has said, I had the op on the 1st Feb 2012, but it was the early stages (T1), from the start I said what ever happens it wont get me down. From the point of being told to now, attitude has got me through the lows, the bad times the laughs (yes we have had a few on the way), the time in hospital and now 4 months post op.
We have all gone through it in one form or another, in the short time I have put messages on here it has helped me (reading comments from others who have gone through it). Even if its only well done from somebody or a relpy to someone else.
Keep your chin up and a positve attitude. Hope all goes well and we hope to hear from you once you are well enough to sit in front of the computer.
Thanks Mick, your perfectly right I must stay positive. I was doing well at this but I must admot that the UGI nurses comments has rattled me but I will get back to positve.
Knowledge, surgery, expertise and technology have all come on leaps and bounds, which is good news for us all.
I am surprised that the UGI nurse made this comment to you. I understand that your confidence has been shaken but I think that Alan put it all very succinctly and please try to think of his words when you are feeling low.
This site has helped me considerably and we are all here for you.
I was at that meeting in London that Alan mentioned. My hand went up when he reached 18yrs. In those days there was no chemotherapy only a surgeon who was prepared to operate. Something my colleagues, all nurses and I had never heard of. Nobody expected me to survive. So tongue in cheek isn't it wonderful to have proved them all wrong? Keep your eye on the light at the end of the tunnel and all of us will be wishing you and your carers well
Be brave new friend. Alan has put it all so wonderfully and he is so right. I run a support group in the south and have many Patient members who would agree with all that has been said here. I am in my fifth year after surgery. It is very scarey but the good old health service really comes up trumps at times like this. Have faith in them. Very best wishes. Verena.
You are so right Verena. The NHS have been quick and efficient with all my tests and my named upper gastric nurse has been so helpful.Thank you for reminding me. I will be more positive when I see the surgeon tommorrow. Thanks,Phil
I believe once we have our diagnosis we should forget all about the statistics as you are now a statistic of one with every chance of beating this demon. I only used the statistics to put my affairs in order, from then on I expected the worst but always hoped for the best. Four years on and hope has seen me through!
The one thing I learnt more than anything going through diagnosis to chemo/radio to operation, is that we're all different, unique in fact, and statistics don't really count for a great deal.
When I was in hospital I used to google like crazy and scare myself witless with stats and facts about outcomes, potential recovery percentages etc. I developed a leak following my operation and the stats on that really freaked me out but my surgeon kept telling me to ignore them, concentrate on my own situation and stay positive.I did and I finally left hospital on Christmas Eve, leak healed and so glad to be out.
Now it's each day as it comes, dealing with setbacks all the time but gradually improving bit by bit. It's a really tough thing to go through but I'm sure you will find hidden reserves of strength that you had no idea existed.
Dear Thorno,you are so right ,it's google that freaks you and as a mathamatition, I do understand the stats but you are also right that we are all different so I am getting my positive attitude back thanks you and all the others.Thank you.Phil
I am 1year in after chemo/radiation treatment having decided I didn't want the surgery. Half way through all the many tests they put you through (you think there can't be anything left to test) I insisted I was going on a previously planned holiday with my daughter. The nurse who had been assigned to help me through this difficult time said "I can understand how you feel thinking it may be the last holiday you have".
My point is the people you think know more than you often don't and they certainly don't know you as well as you. Off next month for the third of my 'last' holidays with my daughter and already planning the fourth. Stay positive and I'm sure you will be another survivor.
Mavis thats brilliant!!!!!!. Thanks alot for that, I like holidays myself. My wife is called Maggie and whilst reading your comment with me she laughed for the first time in days. Thank you so much. Phil
Welcome to the club!!!! rather you not be in it though.I am fully paid up member !!!! Am 14 months since the op and doing ok as many of us on here are,So there is hope.Stay positive as some dont even get as far as treatment so yes you are one of us lucky ones !!!.Just ride with it as cant change the diagnosis.Know its scary though!!Remember how I felt with what your going through in 2010
Thanks for reminding me Griff. I am lucky to be considered for surgery and must always remember that! I am going to see the surgeons tomorrow and the chemo doctor next thursday. I know I will just have to ride with it. Phil
Good on you Phil I say.Its the only way.Bit of a rough journey but as long as your still breathing eh? Youve got a good fighting chance.Stay positive and let us know how your going on.
I can only add to what others have said in that being positive is the best way to beat the odds. Three years ago there was a time when I never expected to see my youngest sons 18th Birthday. Was determined to still be around for it and now three years on went out last week to celebrate his 21st.
sorry you're here- but now that you are there are positive steps you can take to beat this.
I celebrated six years since my surgery yesterday.
I was initially told I probably wasn't a candidate for surgery but then got re-staged as an advanced stage 3.
I remember asking my surgeon what I could do to contibute to my survival.
He said 2 things.......
1. Get fit
2. Get fat
They were the best advice I ever got.
I had never been to a gym - but joined onne the next day. I managed tto go every day even during chemo. By the time I got to surgery I was fighting fit. They tell me it was like having superman on the operating table!
I managed to put on 2 stone before the surgery. Needless to say I lost it all post surgery but it kept me at a good weight even affter some fairly serious complications.
The moral of the story is that it is not enough to have a great medical team. You have to throw yourself into the fight and do everything you reasonably can to contribute to beating this.
Today I run a support group and meet dozens of pre and post operative patients a year. I'm absolutely convinced that positive thinking and actions make the difference.
If you'd like to chat let me know and I'll give you a buzz.
That is great advice Larry!!! It enables me to be pro active. I am already putting a little weight on and I do walk about 10 to 12 miles per week but I intend to follow your advice and do more. Thanks. Phil
Hi Phil, sorry to hear of your diagnosis. I was diagnosed in Jan and told I wouldn't get past June that year - that was over 2 years ago. The only advice I can give you is, it's your life and if you want to keep it you'll have to fight for it. Everyone on here has done that. The only other thing is get yourself match fit and keep exercising in hospital after your op - it will pay dividends.
Thanks Mark, thats what Larry said and so did my surgeon. I saw him yesterday to arrange for a laproscopy staging on monday. If all is OK he intends, after 3 courses of chemo, to do a cardio oesaphanjectomy. So I have 3months to get fit!!
I hope things are going OK Phil. The chemotherapy can feel as if it is killing you (it's only meant to kill the bad cells) and people all have individual reactions to it. If it works reasonably well, it will give the surgery a better chance of success.
Thanks Alan. I had my first day care chemo, the EC part , last tuesday and am now taking the X part twice a day in pill formate. I must say that I do feel quite sick but I know its for my own good. Thanks for all your earlier advice, I am feeling alot more positive. Following Larrys advice I have joined the health gym and am trying to continue walking but I must say this mornings rain has put me off today!!!
I had been given survival stats for 5 years from different sources of between 3% and 30%. I'm still here and alive and kicking 5 1/2 years later. Try and keep your weight up during the chemo, but do not worry too much as usually there is a gap between chemo and surgery of a few weeks. This is when I really worked to bring my weight back up. Let us know how you're getting on and if the chemo is affecting you. Between us we may have some ideas to assist.
Last week the chemo made me ill and feeling sick!!!This week the anti sickness pills have stopped me feeling ill but I still feel sick, especially in the afternoons.
I am 14 months post op. I has 2 rounds of chemo ECX , one before op and one after op. I was lucky with the chemo. The pre didn't give me many side affects, the post was a bit harder. I had all of my stomach taken out and I can honestly say that life is more or less normal. My main problem is just fizzy drinks ! The good news is I am 3 stone ligher.
the surgery didn't hurt, the care was marvellous and I just go back every three months for a check up, so onwards and upwards and focus on the positives.
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