Diagnosied about feb, and have had 2 chemos so far,, they now mention a operation, to remove all the gullet, as my tumor is a bit way down,,,was wondering if anyone here has had this operation ? Its not a nice one, and quite a major one, where they remove the gullet and stretch the stomach up to the neck, shape it,, at attach it to the top again. My stomach will sort of end up being in my chest so to speak.
My tumor was about 8cm this was mentioned before, but im coded as T3N2MO,, T3 means the tumor can be 5cm-7cm, i was told today after a PET scan that the tumor is about 2,4cm now?
DR ANDREW DAVIES the surgeon spoke to me, and looking at a operation around 22 May... saw somewhere on here that they also had this guy, would be interested to hear if anyone else has had this op???
You’ve come to the right place ! It’s safe to say that virtually everyone on this forum has been through or going through an Ivor Lewis procedure ( surgery for Ca Oesophagus) !
Thanks,, not very good on these sites,, how to start a new thread, so tagging onto this ,,, Saw oncologist this week who handed me over to surgeons,, who are lookign at my heart results,, i have a murmour and arteries disease,, Also saw Cardiologist yesterday, who did another ECHO and upped my dosage of pills,, she thinks be more like June for op, as she wants see me again in 4 weeks,, the waiting is the worse part,,, not had chemo now for 5 weeks, and started getting little referred pain again,,,, So on average how long are people in hospital after the op??? Was told about 2 weeks? Also,, what sort of things seem to be the best to try eat to start with? Presume later dietitian will inform us,,,, but i seem to be reading that SUGAR doe snot seem to be a good idea?
Have appointment next week with surgeons,, so should know more by then, i also think ill be speaking with the anaesthetist then also...its the waiting thats getting to me,,,
My husband to our surprise and delight was out after 6 days ! Must admit I was very nervous about him coming home. They started him on yogurt before allowing home and remained on fairly similar soft slushy diet for two weeks or so as early days whilst all was healing. You will be given a dietician referral so don’t worry, also the amount you can eat in early days is minuscule. Tony was given boxes and boxes of supplements milk drinks soups all sorts but all caused dumping so in the end I just puréed everything or made my own soups which seemed to work well . It was a case of trying to keep food in more than anything else as the weight after a few weeks understandably falls off very much.we were always told never to look back but always to keep positive and not to expect any rise in improving weight gain etc till at least a year. At just over 7 months we can at last start to see that happening. Good luck !
Thanks,,, what sort of soups were u making??? I make veggie soup often but presume i need soup with maybe meat in? Will need some ideas for what things people make/made and pureed? My husband will be home with me after i get out,,, i was thinking take 2 weeks off work,, but by sounds of it,, maybe he will need more time than this untill i can do things for myself???
Hi welcome, most of us here either have had or are partners of those who have had this and similar ops I had mine over 8 years ago at the age of 51. If you have any questions do not be afraid to ask you are amongst friends and anything we can do to ease the journey you find yourself on will be gladly given Hope to hear more from you soon
ANY info on what sort of food to have after op,, as need get hubby knowing of these things,,, he is a chef, not from UK, but he will have no probs cooking, but its ideas of what???
For me I prepared lots of very small meals (the size of a mars bar) and froze them they were mainly easy things such as cottage pie,fish pie, etc also them made sure there were plenty of high calorie things such as trifle chocolate mousses etc. Just have things he likes some he may find are ok some may not be The most important thing is to take in calories if he can take in without poor effect cream in everything including soups etc was my plan . Expect him to loose a lot of weight I went from 15.5 stone to just over 10.5 at my lightest and have now recovered to a fairly stable 12 st.
OMG,, FOOD SIZE OF A MARS BAR??? I read allot that dairys not good but you used cream, chocolate,, ok, thats sounds good. I need let my husband know this SIZE thing, as didnt realise so small ..
I had the same cancer type, similar staging and the same surgery in early 2007 when I was 32, I am 44 at this stage and am mother to a 6 and 8 year old. It does get easier with time and I do very much have a busy life after treatment
I had a squamous cell cancer with 2 nodes in the stomach. A trans hiatal oesophago gastrectomy was done in 1994. Best wishes as you start this journey there is a lot of support out there sally
Hi Yvonne. Sorry to hear your news. My husband had exactly the same diagnosis last November- T3, N2, M0. We live in Norfolk and he had 4 doses of FLOT chemo over a period of 8 weeks, followed by 6 week gap before surgery at the end of February. Here the surgeons at the Norfolk and Norwich Hospital usually do a form of hybrid surgery. It's roughly a combination of the Ivor Lewis and keyhole surgery which apparently is less invasive and speeds recovery. That said, the end result is pretty much as you describe it regarding the changed internal workings.
Recovery and after-effects vary hugely from person to person. In my husband's case, he did have a small leak from the join after surgery and had to have a temporary stent fitted. This has now been removed and he's now just started his final 4 sessions of FLOT chemo. Apart from the worse side effects of this (the second sessions are harder for the body to tolerate post surgery), all things considered he's not doing too badly. He has lost weight but, although he has to eat smaller quantities more frequently, has now stabilised at a reasonable weight for his height and build.
All I can say is that, although the operation sounds scary and is major surgery, this site is a huge source of support and encouragement - and many people return to full and active lives in time. Don't be alone or afraid to ask questions - either here or of your medical team. Fear is very real and understandable but it depends on the type of person you are as to how much detail you want! My husband preferred to know as little as possible and take each stage as it came. I, on the other hand, did vast amounts of research into the operation and its potential after-effects - very few of which have actually occurred in his case (pleased to say!). So - just be aware that everyone is different. There is even one lady on this forum who had the op 20+ years ago, is now in her 80s and into all kinds of activities that I wouldn't even dare to think about (and I'm a lot younger)!!
Do let us know how you get on. With all best wishes, Kate.
Hi, thanks,,yes im one to know all i can, and what i may experience, many say i should not look etc,, but this is me,,
So, from reading a few things on here, re the reflux,, and about getting one of these special pillows,, may do that now before the op. I say this, but they are looking at my heart at the moment, to see if i can go ahead,, need few tests done in next few weeks,,
I had 2 round of chemo, with a break of 3 weeks , and it has been like 4 weeks since the 2nd one,,just had a PET scan, and then was met by a surgeon who mentioned the OP, so i think i understood, its op or radio therapy,,, but radio therapy takes some time and then after cant do a op if not work, not cure, as due to scar tissue? I was alone when he said things and i now have lots questions,, so im hoping to see oncologist on 9th May,, and the surgeon again around same time...
I wanted to find out about after the OP, my husband is not English and i need to prepare him, for what he may need to help me with, and to try sort out how many weeks he needs to take from work,,,
Hi Yvonne! Post op is so different for everyone that it's impossible to say how you will be or what you will need.
Like you, I did loads of research and asked lots of questions before my husband's treatment and subsequent operation. I bought warmer bedding,warm hat and gloves (feeling the cold more), a bed wedge (he would need one to keep him upright at night), a variety of snacking, high calorie, high fat, low sugar foods (he would need to eat small amounts little and often) - to name but a few. With the exception of the warmer bedding and clothing, NOT ONE of the other things were used!! He hated the bed wedge (I eventually gave it away virtually unused ) and all the different foods I bought were thrown out. Although he can't eat the same quantities he used to, he eats and drinks pretty much normally now, has a daily can of Guinness and sleeps with 2 pillows instead of one. Although he's lost just over a stone in weight (he did need to lose a bit!), he's now stabilised at around 12st 6lbs, which is Ok for 6ft 2ins. All this just 7 weeks post op and on his second round of chemo! Sure, there have been days of unpleasant side effects, but prescribed medication has dealt with them - and he's getting used to what foods suit his newly-arranged internal plumbing.
So - after my own experience- I would certainly do your research beforehand. If possible, take someone with you to your next appointment (2 pairs of ears are better and it's hard to take it all in). However, just remember that although you will be given a lot of advice re after effects, not all may apply to you and it's wiser (in my opinion) to adopt a wait and see approach and not waste money on things you may not need.
Others may tell a completely different story and the above is merely my view! Best wishes and please keep us posted. Kate
Thanks,, was to buy the wedge,, but think will wait,,,,, i put on so much weight during 2 bouts of chemo, they told me eat, i did,, now stomach bloated, so trying to get some off before the op. It took me 2 years to get 3 half stone off, still bit ov er weight, and now put on about a stone with the chemo and steriods,
Strange that some people lose masses of weight and others don't! Think it's better to have some in reserve just in case (my husband did!) but is gradually putting it back on again. Please don't let me put you off the wedge! Some people swear by them - and others get adjustable beds. My husband is so stubborn and determined that - as far as he possibly can - life will be carried on as normal. Not a bad attitude by any means but everyone is different and you will need to discover what suits you best . Best wishes, Kate
The wedges are not cheap but you can get a special code from this site for Putnams and you can buy them an awful lot cheaper than the advertised price. Just email OPA and ask for the code if you decide to get one. I think ours was about £30. Kate
Yvonne don’t try and get rid of weight before the op !!your going to need that reserve trust me ! Those etc calories are important for you ! Honestly you won’t realise how little you’ll be eating and that weight gain is your strength as well ..you’ll need it . As others have said no two people are the same but one thing is for sure YOU WILL LOSE WEIGHT and you won’t have the capacity you used to have . There will probably be foods you can no longer tolerate so don’t worry too much about your weight at this point , just concentrate on getting better . Xx
OK, was worried im to heavy for the op? Gone up to 90 milos? But got weighed this week at cardiologist and they said 94?? Now day before weighed with oncologist was 90? THINKS SCALES OUT A LITTLE? ahahahahahah
I was diagnosed with squamous cell cancer two and a hal years ago. This is a very supportive forum. It’s not an easy operation but there is a lot of support for people who have had this surgery. It takes time willpower and support to relearn how to eat and rebuild strength. It takes a while to recover. But you really can have a good life after doing the the things you want to do. Good luck with your surgery. You have the summer months to convalesce After a while recovering I’ve gone back to ballet lessons 50 years after I stopped! My main worries now are how to improve my uncoordinated feet try and learn the steps and stop thumping round elephant style! Surgery is now two years ago and as long as I respect my new body I really can do much as I did before. Make sure you get advice and help you need now and the immediate future and think about what you want to do afterwards. There’s lots of useful tips through the OPA and support nurses! All the best!
Had the same cancer type. Had 3 rounds of 3 weekly chemo, then 25 chemoradiothrapies *(weekly chemo with radiation daily for 25 days) and then the surgery. There are two - one is called the Ivor Lewis and the other the Mckeown. They do the same thing slightly differently. I had the latter minimally invasive at the Norfolk and Norwich. It is hard, it is life changing but it is the way to survival. SCC is usually upper or mid oesophagus so slightly more complicated surgery. You've had a great response to the chemo (I had a 6cm tumour) so that's good news. SCC's are usually also treated with radiation as they are very responsive to it. The protocol followed for me is currently seen as the gold standard and based on the Dutch Cross trial. It is very hard going to have all 3.
I wish you the best. I started my chemo in Feb 2016 and had the surgery in Sep 2016. Unfortunately despite it all my tumour metastases into my hip joint so I've had further surgery and radiation. However, I am still alive 2 years and 3 months later so no matter how tough it gets - its worth it.
Wish you all the best and contact me if you need any information. I could barely sleep after my diagnosis so spent most nights doing extensive research. It's good to be informed as it may save your life. Too many patients know very little about their treatment and cancer.
Hi,,i was told my tumor was 4cm when diagnoised, then after more intense scans, 8cm,, that was a shock,, Yes 2 chemos, and i think i got away light, ulcerated mouth, odd days of tiredness,,, but ate like a horse,, as i was told to eat loads,, but now too much weight on, and im cutting back,, need half stone off if i can b4 the OP.
The PET SCAN over a week ago, it seems they said the tumor was 5,6cm and not 2,4 cm?? So all sorts of measurements,!! Getting to know things about after the op, re foods,, not eat late seems to be important,,,get a special pillow?,,, Worried about the re flux, as i have a bad phobia on being sick,,, some say not have milk as gives the runs,, others i read say MILK they have with a coffee and helps?
Porridge, soups, mince have read are easy to get down,, so im getting all these ideas,,
Was told if the op goes ahead ill be in about 10 days, but another person i met at chemo was in 2 months,,, phhewww
No two people are identical really with this mammoth op. You’ll learn as you go and on the whole your body will tell you what it can and cannot tolerate ... mainly sugar and in the very beginning only very small quantities. You no longer have the stomach with the capacity to “store”the food until it digests so it rushes through the system too quick and that’s what causes dumping ...not very pleasant at all . My husband to our surprise and pleasure was out after 6 days ... thankfully as far as that part went ..was straight forward!Good luck x
Andrew Davies is one of the surgeons at St Thomas, and you can have absolute confidence in the team there.
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HES THE GUY I SPOKE TO, and ive read up on him, my op if goes ahead will be at ST, THOMAS
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SEEMS hes not doing my op,, but a cara baker, a woman???
She is one of the team. They work closely together and it is an excellent unit.
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Swallowing difficulties 5 months post-op
