Hi, I am 56 was found with OC by accident , hopefully early, and am just coming to the end of my chemo with IL scheduled for July. I read of how brutal this op is and I doubt my ability to deal with it. I wonder if if I would be better staying as I am and waiting. Does anyone regret having the op and would now turn it down? Would love some advice please
If you have had the Ivor Lewis op, do... - Oesophageal & Gas...
If you have had the Ivor Lewis op, do you regret the decision?
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Lucoid
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Absolutely no regrets - this cancer is so very aggressive - we wanted every chance - that's what surgery gives you - yes it is brutal but so is the cancer.
I had the op. in March 2010
Yes it is brutal, mine more so than most, I had so many complications.
But I count myself lucky that my cancer was T1, and I was able to have surgery.
You say should you stay as you are and wait, but you won't stay as you are, soon you'll be very ill. Then you'll be desperately wishing you'd had the op. and it will be too late.
Thanks - I think I am still coming to terms with my situation. When it was confirmed at Easter, I believed I had been lucky to have it found by chance. Also I was told I was fortunate to be able to have surgery as many don't have this opportunity. I will have to knuckle down, deal with the new me and just get on with it. I want to stay with my beautiful wife as long as possible, and this is my best chance.
Hi Lucoid it,s been 7 years since my op, yes we all have some problems with this horrible thing, that's why this site has helped Me a great deal, most of time I forget I have had the op, but it soon lets me Know I have gone too far in forgetting that I have had it, I am also been back working for 5 years, and enjoying every moment I am here, you will soon be having a glass of wine or two, I have been so lucky with my Hospital team I see them once a year, and I can phone them anytime if I have a problem, but not have needed to for a very long time, (ps I can chase my wife around the room now, Ha)
• in reply toabreynolds
I am due to have the op next month if my heart is ok to take being knocked out,,, 5 ys later and your still here is a welcoming thing to read. xx
Last Friday week I was talking to somebody who had had the surgery and was eating and coping without significant problems a few weeks after the surgery. The other people in the group congratulated her, and admitted to a bit of jealousy - complications are not compulsory! There are a good number of people who have this serious operation who do have a really good prognosis and do not suffer unduly from side effects. You would not believe this from reading the posts on this website but it is nevertheless quite true.
So my advice to you is this: you are quite right to be wary of the surgery and to have a bit of anxiety about the outcome of the whole thing. You are entitled to feel low after a round of chemotherapy. But if you do not give yourself the chance you will never know whether you will be in the group of people who have the surgery, have some after-effects and still count their blessings; or in the other group who have the surgery and are real success stories.
If you are going to be successful in this situation that has been thrust upon you, you will generally do best if you know quite a bit about the condition and possible outcomes, but do not get obsessive about the details. You will have good medical staff doing their very best for you, and, by definition, they have put their faith in you as somebody who is going to come through the whole process successfully (notwithstanding that there will be days when you might want to give up).
There is a saying that we do not given burdens that are beyond our strength to bear - it is just that sometimes we do not realise what strength we do have.
I think, from what you have written, that you have every chance of a good outcome. Last Saturday I was in a room full of people who had had this surgery, sometimes many years ago, who have a good quality of life, and we look forward to you being able to join us in the future, if you fancy it.
Lucoid• in reply to
Hi Alan,
Just to say thanks for the advice. I am back home 10 days post IL now and I survived, and though very early days, I seem to be in reasonable shape.
Again my thanks to you and the OPA for your help and advice
Steve
Hi Lucoid. Came across your post, i wondered how you are doing now 3 years later. i am glad you decided to go ahead with the op. I had mine 2.5 years ago, I'm only just beginning to feel normal. i have to say the op was no picnic, but not as bad as i expected. In short i am happy i went ahead, and enjoying life to the full. I hope things are the same (or better) for you. take care. Mike
Hi Mikey,
Haven't been here for a while, I am now 3.5 years post op. Slimmer having lost 16 kg and a steady 80Kg. Generally good - get tired, bit breathless at times. My surgeon says I have an excellent surgical result given my mobility, and recently was discharged. I sail so am back on the big boat, won my first 2 handed race back, and even own a second boat so I can sail on my own. Psychologically - huge impact as it was such a mountain to climb and stuff which was vital before the op now seems so trivial.
But - yes it was worth it and the right decision - I hope things are continuing to to improve for you as well Best Wishes Steve
• in reply toMikey2711
phewww im a bit more reassured reading all this
Hi Luciod
Would like to know how you are coping now. One of my family members are going to have the operation in NZ. What is your feedback.
Hi RVNZ,
Yes I am fine, starting to worry about my weight even. I had my Chemo at Canopy Cancer care at the Mercy Hospital, and surgery by Richard Babor at Middlemore. The care I got all the way through was excellent. Hope your relative gets the same
Hi Lucoid , i to had Dr Richard Babor. He is a fantastic surgeon and a excellent role model .
Richard Babor also saved my life and carried out an Ivor Lewis.
The cancer coordinator is fantastic , she is filling in for the full time person who is away on maternity leave . Her name is caroline and she is unbelievable at making decisions and getting plans started and followed up.
All would be good , except i have eating problems , the opp was 9 mths ago , but i still lose weight . I just have so much trouble chewing and swallowing.
Every time i swallow , i have to wait a few mins , until a tiny burp happens , then i can eat a wee bite and do it all again.
I also have constant bad taste like reflux.
Any ideas , life would be great if i can just figure how to eat and enjoy it again ?
Cheers Grant [Pokeno] New Zealand
Thanks for that balanced reply Alan, I really appreciate it. Most of my negativity follows my meeting with my surgeon to sign the consent forms so was quite graphic. My previous meetings with first surgeon and oncologist were better. If I can get to Guys it would be great as it is 24 hours flying time away from here.
Hi
I have no regrets, it is a long hard road but it is one I am lucky enough to still be travelling and enjoying. Yes life is different and some things have changed forever. But I am alive not in pain and with a bit of planning and thought manage almost everything I want to do.
Good luck Liz
Hi Liz,
Thanks to you as well- I just need a good kick up the behind and take the chance that has been offered to me.
Best Wishes to you as well Steve
You have been given a chance, yes it is not an easy road to start with but here I am 19yrs later against all the odds. Just about to go off swimming to counteract the process of ageing
something I never thought I should be able to think about. Best wishes and if you get to Guys I shall be there
Good luck Sally
• in reply tosallym
wow, 10yrs after the op,, most i have read, they give prognosis as like 3 yrs,, wooo now this had cheered me up.,.. Guys London? thats where i went for my chemo,,, I hope to have the operation next month,, they are checking my heart out, as i have a condition,, hope get the go ahead fro the op.
liz_crisp• in reply to
Hi how are you, did you get thego ahead, I hope so. Take care Lizzy
• in reply toliz_crisp
Just HAD AND AT HOME NOW,, ALL WENT WELL.. Just struggling with the eating now, NO regrets,,,thanks to MS BAKER and her team at st,thomas's
liz_crisp• in reply to
That great, glad you are back home, The eating takes time, little and often and whatever you fancy. Good luck, and best wishes
My husband T3 N1 was considered a good candidate for surgery, however a second PET scan showed perioesophageal metastisis. so we were told surgery was no longer an option.
We were floored but have an excellent team at The Royal Marsden and do believe that this is the best QOL path for Peter.
What I am trying to say is that surgeons /teams do not offer surgery unless they are sure it is the best option, yes its scary but as others have said neither care pathway is easy. Trust your team and make an informed decision on this opportunity.
Best Wishes and Good luck
For a long time I really thought the cure was worse than the problem. I am now 4 years post Ivor Lewis and although we are never really over this major op I am now getting along ok. I would say it is worth it if you just stay the difficult course.
NO.The aternative is death to put it bluntly.Yes op hard to get through but certainly worth it.Site will help you through it as some lovely people on it with all the experience.
Hi I was 48 when I had the op and have no regrets. Recovery takes time and has its ups and downs but I have seen my daughters grow up and had some wonderful times in the last 10 years since the op. Without the op I wouldn't have. I am so grateful that I had that chance. Weigh things up and do what is right for you.
love
Krysia
My husband aged 45 had a 3 stage oesophagectomy jan 13 with removal of 56 lymph nodes. No post op chemo. Made a fast recovery, already back at squash, cricket, badminton and some running. Was back at work after 3-4 weeks, few hours at first then slowly back to full time. Yes there's adjustments, smaller more often meals and some swallowing difficulties but this can be sorted I think. He was nearly suicidal before the surgery, wondering if he would ever be the same again. He's doing so well and I'm sure that you will to. Try to keep as fit as possible before the op, maybe some walking every day or some sport if you feel up to it after the chemo. You will have less complications the fitter you are especially with your lungs. Best wishes. Nicky
I'm just over 6 months post op and I was frankly terrified by the prospect - not least as the same cancer killed my father when he was younger than me, and more recently his brother (to be fair, my father didn't present himself until very late and this was in days before endoscopy and scans). I have been lucky in that it was caught early and I wasn't thought to need chemo. I had the "minimally invasive" operation and my recovery has been surprisingly good. I can eat most things (in smaller quantities) and apart from the very common (it seems) discomfort on my right side no other side effects - so far(!). It can work well but it depends on so many different factors - I could have all too easily had a more difficult time and I'm eternally gratefull for skills of my surgeon and nurses throughout the process.
My husband is just about to start his last round of chemotherapy before surgery at the beginning of August, that's if the CT scan shows no further spread. We are both very anxious about the operation but he knows he has to go through with it as it will be his only chance of a cure. We know just how you feel but it's not about needing a "kick up the behind" as you say, it's all about being naturally anxious and trying to find another route out of this aggressive cancer and major surgery. But deep down you know you have to summon up the courage and go through with the operation as there is no other option. Reading all the messages of hope, courage and achievement on this site, you know you can do it! We'll be thinking of you in July when Russ is going through his pre-op assessments and feeling just as frightened as you are now. Good luck and keep strong. Val x
Had op in 2007 and like others told there was no alternative. As others have found, there has been side effects ever since ..... until about five months ago when all problems stopped. I have never felt better, I can eat or drink virtually anything (but not yet tried a curry!) at any time without any reflux heartburn or indigestion - a normal portion of fish and chips late the other evening - no problem (previously unheard of)- its as if I never had the op. The gastroenterologist is at a loss as to why the dramatic change but I am not grumbling. From having nightly reflux there has not been one incidence since the beginning of the year and because I can sleep better I feel much better.
I am not gloating. I just want to give others hope and encouragement that although it may be a long time - 5 years in my case- it is well worth having this life saving procedure.
I don't regret it.
Good luck and keep positive
I had a complete gastrectomy in March 2011 at the age of 73. 36 lymph nodes (11 positive) were also removed. Chemo before and after. Some problems with blood clots in arm and a bout of pneumonia but came through. I am now fit and well, bike, walk, enjoy dining out, holidays in Spain and Italy and pretty much any activity I wish. I was back at work running my own company some six months or so after op. I do not have scans (just the one post op and chemo) or bloods, and have been told by consultant to go away, enjoy my life and check back in a year.
Small regular meals, eat what I like, enjoy a beer and/ or a couple of glasses of wine, weight is up and where I want it to be (13 stone 6 ft tall) but tend to avoid white sugar. Bile reflux and a bit of dumping can occasionally get me down, but learning how to deal with it. Even without a stomach Gaviscon Advance can still help by 'blanketing' the bile.
Hope this helps.
You mentioned that the OC was found by accident and may be early. Mine was found early when they found a GIST in my stomach and was T1. T1B at the time of surgery. (2nd layer of the 3 stomach layers).There is the alternative Merendino Interposition which I had 18 months ago with the advantage of no reflux. Reflux is the major drawback of the Ivor Lewis as well as the surgery and digestion problems, but you must have an op before it spreads to the Lymph nodes or liver. But as I said it is only for T1. It is major surgery also and you must be fit in all cases of major surgery. I was 66 when I had mine.
Do some research on Merendino Interposition and if I can help with feedback let me know through the OPA who have my contact info. I lead a completely normal active life but with the same digestion problems as Ivor Lewis but zero reflux. The long term prognosis of the Merendino is excellent .It is a very rare op and you may need to find a surgeon prepared to do it. My op took nearly 7 hours due to thecomplexity of the new 'plumbing' inside. If your surgeon does not do this op he may not suggest it as an alternative.
Another option for T1 is Halo Ablation which is not done in the UK for stomach cancer as far as I know as the risks of spreading are greater. I understand it is done in Germany & the USA but is unproven long term. It basically is scraping of the stomach walls with attendant bleeding which has to be controlled. Again do some research.
And, speak to your surgeon about the alternatives and risks.
Thanks for this. I Will get another appointment to discuss. My main concern as I am in New Zealand is getting a sufficiently experienced surgeon as I read this is important to a good outcome. My Gastrocopist spoke of ablation but didn't feel it was appropriate for me and IL was best option.
Hi Lucoid
I didn't have the Ivor lewis op, I had what they call the shark bite op. A left sided Oesophagectomy, I was cut from under my shoulder blade right around to my sternum. I am not sure if one op is any worse than the other, I think they are both pretty full on but as I have said before on this site if I had to have this operation again I would have it tomorrow. being worried about things is quite normal, everyone on this site has had the same fears. Don't forget we are all here for you if you need some support.
Kind Regards
Steve
apparently Steve this is the Ivor Lewis..the shark bite is what I had and wondered what the difference was, answers came that it is the same.
Hi Bernadette
I asked my surgeon about this and he said what I had was a left sided oesophagectomy and that the ivor lewis was divised by a Welsh surgeon called Ivor lewis and was different. The guy in the bed next to me had OC and he was cut down through his abdomen and a smaller cut in the side, he was stapled back up where I had dissolving stitches so I was told they were different but obviously with the same outcome.
Kind Regards
Steve
Sometimes in quiet moments I reflect on what I and many others have been through and shudder at the thought of everything that's happened - there's no denying that it's a massive operation; scary and totally life-changing but it offers the chance of life and that's the bottom line. I had many complications leading up to surgery but I was so relieved when it finally came because the alternative was unthinkable. Life is different now but it is life and actually getting better every day. Ultimately I am so grateful for the chance that surgery has given me and incredibly indebted to the wonderful people that helped make it a possibility.
Peter
If your gastrocopist spoke of ablation then it 'could' be early cancer, so you should ask about Merendino Interposition which is removal of part of the stomach and oesophagus and the insertion of 10cm of jejunum from lower down the digestive tract. The idea is that jejunum is normally closed and opens when food transits down, and pushes food down also naturally. He would not even have mentioned ablation if it was very serious cancer and would have said IL straight away. As long as the cancer has not passed through the 3 layers of stomach into the liver or into many lymph nodes Merendino is an option. Make sure you talk to somebody about Merendino and if an option find a surgeon who can do it.
I believe with early cancer they can open you up, take samples for immediate checks for cancer and make a decision on which op then, but its all time and cost consuming and is not always considered and the IL is done as its the conventional way. Push for the right way for you and not the easy or cheapest way.
However, I am not a doctor or surgeon, so seek professional advise. All I can say is that I am able to lead a 'near normal' life with no reflux.
Another option is Roun en Y but I do not know much about this. It was another option offered to me. Again, research this and ask. Also ask about bile reflux which people on here have spoken of as being horrible. I do not get this with Merendino.
Have no doubt though that whichever option you choose, its a major operation, which you have to do to live, so get fit which reduces the risks of complications. If you are overweight, get it down.
Hi,
I had the Ivor Lewis operation in March 2013 at the Royal Derby hospital Already I'm feeling very well in myself, eating virtually as normal just smaller portions. I am now at the stage where I want to do things but soon short of breath and feeling tired (from what I have read on this site this is quite common especially so soon after the operation) I am going for regular walks in an attempt to build myself up and feel quite comfortable up to one mile. I know everyone's different but I'm sure the operation is the right route to take.
All the very best
Keith
Hi,
I had the Ivor Lewis operation in March 2013 at the Royal Derby hospital Already I'm feeling very well in myself, eating virtually as normal just smaller portions. I am now at the stage where I want to do things but soon short of breath and feeling tired (from what I have read on this site this is quite common especially so soon after the operation) I am going for regular walks in an attempt to build myself up and feel quite comfortable up to one mile. I know everyone's different but I'm sure the operation is the right route to take.
All the very best
Keith
Hi Luciod
no way do i regret the ivor lewis, agreed it is radical but needs to be as far as im concerned my cancer is in a bucket in some lab somewhere not getting its teeth into me, Im 8 months post op, 61 and feeling like i can climb everest, im back at work nursing and cant wait to get up every morning, its not easy to listen to a stranger telling you ,you have this horrible cancer thing but all you can do is trust their judgment, your not the first you certainly wont be the last and these guy's know their stuff just look at the survival rate compared to ten years ago, i understand we are individuals and all respond differently to any treatment i can only quote my own senario..if somebody is offering you the Ivor Lewis its not to practice on you its because they honestly think you need it, whatever your decision GOOD LUCK with your future and a happy life ahead
693,792,001 -- and counting--that's the number of extra seconds I was given and I have relished every single one with my wonderful wife,son,parents,other relatives,friends and neighbors;despite the fairly ghastly problems post-op.
Thank you all for your replies - please forgive me if I don't reply individually as it would get a bit repetitive for you all. But again, thank you for taking the time to to write such comprehensive replies.
I am back on track in my head now, and know this is the right approach for me. My doubts came from the fact were that I was asymptomatic - perfectly healthy. I knew that making myself ill to beat this was going to be tough and I was right. I looked at so many sites and found them worrying, but I am grateful I found my way to this site.
Best Wishes to you all
I had the IL 20years ago definitely no regrets it's tough but you will get through it and you will adapt.
I had Ivor Lewis surgery 2 years ago and am now going for my 9th dilation. I have felt sickly
ever since ans have had ct scans showing no cancer. Cannot figure out why? My quality of life has so changed that I sometimes regret having had the surgery.
4 weeks in with the ivor lewis op for dad, he is finally feeling less pain, been heartbreaking, he was in critical care for 14 days, looking like he was going to die, but getting there now, think its going to be at least another 2 months now. x
Early June 2016 I could not drink, was living on a feeding tube. Choice is?
Operation.
<sitting in office chair, takes swig from a normal long cup of instant coffee, I need the liquid, date is 23rd August>
Not only was the operation done, with complications, chemotherapy had failed to shrink the tumour, it grew, difficult to get out but here I am well enough to write this. Even did some serious house plumbing yesterday. My wounds itch, whole areas of skin are numb, best not bend down and so on, use my legs. A few weeks ago I stopped all pain killers for the wounds.
My hair has regrown. I've had partially collapsed lungs, still a bit iffy. Could walk a mile, if slower than of old, things are getting better. Have been able to drive for some time. Weight seems stable if low, was anyway.
I believe they say go figure.
More treatment is coming shortly, going to be vile. Can it be as bad as last time? Maybe but the removed part is gone.
In January 1989 after a period of ill health my father was diagnosed with inoperable oesophageal cancer, between then and the October it was a steady decline in which he suffered terribly finally dying at the age of 62. Fast forward to 2002 and I was diagnosed with the same problem, the difference being that I was fortunate to be offered an IL (I had a six week course of chemotherapy before the op which was purely optional at the time) and 15 years later I know what option I would choose! As a previous post has explained, without the operation there is only one outcome and it's a pretty grim one! Go for it.
If you are offered the surgery, I exhort you to take it. There is no alternative and you will be amongst the minority fortunate enough to be offered this lifeline. It is never undertaken without curative intent; the alternative is therefore, a priori, evident.
An Ivor Lewis is big. It is brutal. It is life-changing. It is an opportunity. I underwent the procedure in June 2015 and I thank my surgeon every day.
nope never as I would have been through the pearly gates a long tome ago 11years post op.
not very nice at first but got better and better, I was signed off last September. after op I was in hospital for 10days, found out how to get out at that time, when the breakfast comes around as for say cornflakes hide in your side cupboard, till the consultant comes on His rounds pretend to eat, they like to see you eat, sent me home that morning by cab, still in my hospital gown. Had district nurses come and change my dressings, felt much better being home. you will have good days and bad to begin with. what I did was to eat like a French man very small portions of food, Do try Wiltshire farm foods, they do small meals that are puréed so you can feel like you are normal they are quite nice, till you can go to kinder garden food, its a slow job, but now I have a glass of red now and again. and living life to the full,
yes huge op ,but worth it
Hi,,,just had the op, been home about a week,, no regrets so far,, to me there was not much of a choice,, after some chemo and a bit of shrinkage of the tumour,, it was the op or chemo/.radio therapy,,, now if that didnt work, to cure me,, then the op was out re scar tissue,,, My thinking was no choice if i want to live longer. I can honestly say had NO PAIN at all from op,,, yes i ache much, more so after op than now, but can call it pain, it is very uncomfortable,,,so far to me, the worse thing, is trying to eat, much is sticking and need to be stretched,, once see the team in 2/3 weeks time,, presume they will get it stretched for me, seems this is quite a norm with this op. I can praise Ms Cara Baker and her team at ST,THOMAS'S enough for the op and the great after care in hospital,.
I am 3 weeks post surgery, was T3N0M0, caught early they say. Yes the operation is brutal but you will get through it. No regrets as it will give me my life back. All care has been great, I am eating soft foods and starting to move a bit more. Keep taking the meds, sickness tablets and avoid sugary foods for the best results, sleep when you can and don't worry that your routine is out of sorts.
Hi like you mine was found quite early , i was offered the ivor lewis op , i said yes straight away glad i did and im 70 years old , good luck
I wasn't offered an IL. I just had a standard Oesophagectomy, but I hear the IL is far less invasive than what I have. I don't know the ins and outs of the IL, but I have had a third of my stomach removed and two thirds of my oesophagus as well as 43 lymph nodes and surrounding muscle. I have a scar from just left of my navel to just below my left shoulder blade. That said, five months on I'm doing really well and was back at my desk about 10 wks after surgery. Note: I have just had my 57th birthday, so we are similar ages. I don't want to scare you, but I wouldn't delay any longer than you have to. I was told by my consultant that the fact I was refered to Oxford was a positive thing as hospitals only refer patients to him that they consider treatable and that he doesn't even see 50% of people as they have already left it too late.
hi I had my ivor lewis op 12 months ago .its big but worth it ,good luck and keep in touch.
Cliff
No regrets whatsoever, it's life-changing no doubt but if you are flexible in adopting new eating habits and don't fight your stomach - be nice to it, then you will soon adapt. Keep fit and active, don't just rest, get up and go for it.
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