I have suffered with gastric reflux for 18 months at least and have had omeprazole and zantac. My gp wanted me to have an endoscopy a year ago but I didn't want it done but two weeks ago she suggested I should have it done. They found an hiatus hernia, duodenitis and a tumour, most probably malignant. I had a ct scan this week. The waiting for results has been so stressful that I asked the doctor for some valium and that has helped. Yesterday the consultant phoned me and it is indeed a malignant tumour but so small they could hardly see it on the scan, and wouldn't have seen it at all a year ago. He said they could operate and I will be cured! but it seems such a drastic operation for such a tiny tumour and I am really scared. I feel fit and well and manage to eat fairly reasonably. If I have the op I am going to be suddenly not feeling too well and will never be the same. Does anyone think the op is worth all the pain and eating difficulties??? Any help would be appreciated
should I have surgery?: I have suffered... - Oesophageal & Gas...
should I have surgery?
It will all depend on what stage the tumour has reached. Sometimes when it is only on the surface of the lining of your oesophagus, it can be removed endoscopically ie without a section of the oesophagus being removed, but it is only the experts that can tell you whether that is possible, and it is only a very small proportion of cases in any event. So it may well be that you have part of your oesophagus removed, probably after chemotherapy.
It sounds as if they have caught it very early and that you therefore have a very good chance of the treatment being a cure. There are very many people who have been diagnosed too late who would have given their eye teeth for that prospect of success.
There are a good number of people who have had the surgery who have a good quality of life for many years afterwards, and if you would like to speak to somebody who has come through the experience successfully, do ring our helpline on 0121 704 9860.
When you look at the posts on this site, you probably get the impression that everybody has problems, but there are people who do get treated and come through successfully without all the complications. They tend to be the people, like you, for whom it has been caught very early.
I think you are quite justified in being very apprehensive about the whole thing, and the waiting for the results of scans can be very traumatic. Whatever anybody else thinks, the decision is yours. All I would say is that you will have difficulties whichever way you decide; that many people prefer to face their troubles on the road to a cure rather than the alternative; and that if you delay, you probably will not have the opportunity of going for the cure.
You have our very best wishes and sympathy for the situation you are facing, but you will find remarkable support from the doctors and nurses who will be on your side and do the very best for you. And that is very precious.
thanks Alan for replying. Yes I have been lucky and it is small and hasn't spread. I have a list of questions for the surgeons when I get to see them and I guess I will have to have faith in what they decide to do. I will be updating as I go along. At least everybody hear has had the same worrying journey and so you understand. x
You may find this comment disturbing but you need to know the options available to you. We on here are here to help and you will get our support. We are not experts so always consult your surgeon and medical team. It is not the end of the world, face up to it, fight it like we have all done and in your case you have been very lucky that it has been found early.
Firstly you do have to do something. Reflux can turn into something serious and if in your case cancer has been detected it has got to come out or you will die.
I was in a similar position 2 years ago. I had a GIST in the top of the stomach very near the OG junction. When it was removed they found T1 cancer. The choice was to remove it or 3-5 years! I am no expert but here are some options to discuss with your surgeons:-
a)Halo ablation which basically burns off the top surface of the oesophagus. This is not done in the stomach as far as I am aware in the UK but is in some other countries such as the USA & Germany. There are risks to this as it may not all be removed. It is done in a similar way to an endoscopy. The risks with this is bleeding. It is not a major operation but understand the risks. This is for oesophagus or stomach surface treatment and not deeper.
b)A merendino Interposition which is the removal of part of the oesophagus and stomach and the insertion of a length of jejunum. This will stop reflux. It is for T1 cancer only which may be what you have if its very small. It is a major operation so get fit. I had this done 18 months ago, continue my life as before but do have digestive problems. I can do everything that I did before the op but with some muscular discomfort. You can contact me through the OPA if you decide on this route. I did not have or need any radiation or chemo therapy.
c)Rouy-en-Y which is basically a bypass op. I do not know much about this.
d)Ivor lewis which is the removal of some of the oesophagus and all or most of the stomach and everything is pulled up and attached to the remaining oesophagus. It is the most common op for serious cancer and has the disadvantage of giving permanent reflux if lying down and can be dangerous if you faint and you cannot breath. I would suggest it is for cancer that has progressed much further than what you have. It is the most common op as unfortunately most people have serious T3 or 4 cancer before it is found.
There may be other options. Ask.
Before accepting option d), do your research, ask questions and find another surgeon if he will not do what you want. It is your choice to have whatever op you have and not the easiest for the surgeon or the cheapest.
The ops are major and in all cases except a) digestion is upset dramatically and you have to live with the consequencies, but you survive. It will take a year to get over the op. Get fit now, & you will breeze through the op and recovery will be quicker. Show them and us what you can do..............be positive and confident.
I and we on here are here to help and support. We wish you the very best and be assured a lot is known about oesophagal and stomach cancer and you are in fact very lucky as most people find out when they cannot swallow and serious cancer has devloped. You are not alone. Please keep us informed of your progress.
Reflux should never be ignored and it is being ignored by too many. My father ignored it and died of oesophigal cancer.
thank you for your reply. I don't go to doctors and I certainly wouldn't bother one for indegestion or heartburn and that is the trouble isn't it, most people wouldn't .It is far easier to get an over the counter medicine but of course I don't think people are aware that those symptoms could be a sign of something more serious, I certainly didn't. I am very lucky it has been caught this early and they can't see any spread so probably won't need to chemo. Oh I managed to put on a whole pound in weight this week, I am so proud of myself, but it was flipping hard work.
I am writing a list of questions for the surgeons and will have to take it from there, will let you know how it goes x
You ask is the pain and all the eating difficulties worth it. Yes it is tough,while you learn to sort out all the changes .There are no guarantees . Am I pleased I had it done, well 19 years post operative now and life is good, I have been around to see a lot of events I would have missed and (tongue in cheek ) I am possibly healthier than the folks that watched me go through it. Listen to the surgeon and remember there will be an enormous amount of support out there to help. Thinking of you sally
I had T1 and was advised that the only sure way of stopping the spread of cancer was the operation & for the surgeon to assess if it had gone any further during the op by taking out lymph nodes nearby to check. It sounds to me like you are in a similar position I was in 2 years ago.
When i went to an OPA meeting I asked a surgeon why I was not offered chemo etc. His reply was " did you only have T1". My reply was yes and he said that is the norm as you dont need it because the cancer is localised. Removing lymph nodes is the final check of success.
18 months post merendino interposition my recent CT scan had no signs of any cancer.
My father would not go to the docs and he died. Be grateful we have both found the problem early even if the future ahead of you is worrying.
Ask exactly where is the cancer. If its just on the surface, ask about Halo Ablation. Overseas you can have Halo (available here now in the stomach?) in the stomach also if it is in the first of the three layers of the stomach. The problem is I dont think they can say how deep it has penetrated. After the op I was informed it was T1b which means it was in the second layer of the stomach.
Hi Fiery
I am one of the lucky ones, mine was caught early and it was only a tiny tumour but I still had to have an oesophagectomy and chemotherapy. I haven't had as many problems as a lot of people who visit this site and I put it down to the cancer being caught in the very early stages and also being as fit as I could be before undergoing the operation. Despite this I do experience certain problems eg. dumping. However if I had to I would go through the operation again tomorrow. I consider myself lucky to still be here 6 1/2 years later. Good luck with everything, wishing you all the best.
Kind Regards
Steve
Hi Steve, that is very encouraging and makes me think perhaps it would be worth having this big op. Were you in a lot of pain afterwards? Or were they good with the pain control?
Hi Fiery
To be honest I wasn't in a lot of pain, it was more discomfort than anything. The pain management was really excellent. It is a big op. But in my case it was worth it. I don't want to advise you what to do but I would recommend that you read carefully the answers you have been given to your question.
Best Wishes
Steve
sorry to be a bother but how long were you in hospital and did you have to have a feeding tube? I am trying very hard to maintain my weight ( I am 5ft 2ins and weigh 7st 3lb. I can't afford to lose too much weight after the op and get too weak. I am going out every day for an hour with my dogs. I am trying to stay physically as strong as I can for the operation. Nett
Hi Fiery
Please don't think you are being a bother, that's what we are here for, please ask as many question's as you need to. I was in hospital for 10 days and the nursing staff were wonderful, also I didn't have to have a feeding tube, I could be wrong but I think more people don't have a feeding tube than do. As to losing weight we all do after the op but tend to put it back eventually. I Iost 2 Stone but am now back at my normal weight. also you will have to put yourself before your dog's for a while you can only do what you can do.
Kind Regards
Steve
Hi Steve, thanks for the information, if I lose 2 stone I will only be 5 stone!!!! My animals have all been sorted and I know it will be a long time before I can have them home but for the moment the exercise is good for me as long as I don't overdo it, plus I meet other dog walkers and it is good to have a chat, I live alone so don't have a lot of social contacts. It isgood to hear you are doing so well, it is very encouraging for me to hear that. I have been told if I don't have the op I will probably only live 2 years so I don't have a lot of choice do I
Hi Fiery
I was told if I didn't have the op I had 1 year even though like you it was a tiny tumour. I'm lucky I'm still here 6 1/2 years later. it speaks for its self really . I also get out everyday for a walk and I know what you mean it is important to be able to socialise.
Best Wishes
Steve
Hi Steve,
Excuse me butting in on your conversation, but you say you didn't have a feeding tube? Does that mean you could eat immediately after the op?
I had a feeding tube through the skin into my jejunum, for ten weeks. It was not painful, but a little inconvenient. I went from 12st down to 9st.
I didn't know some people didn't have one. Jane
Hi Patchworker.
No I wasn't allowed to eat for the first six days. Then I was given a small portion of jelly but I didn't eat much of it, I wasn't hungry to tell the truth. The next day I had some soup and so on, just small amounts of easy to eat things. My surgeon told me not to be in too much of a hurry to eat. I got out of hospital after 10 days, and I was given OPA books by the specialist nurse on what to eat etc. Incidentally the man in the next bed to me didn't have a feeding tube either, he had the Ivor Lewis op where as I had a left sided oesophagectomy. So I really don't know which is the norm maybe we were both lucky, I'm sure Alan would be able to answer this better than I. Hope this was of some help.
Kind regards
Steve
Hi Jane,
I only weigh 7 stone so if I lost 3 I would be in big trouble. My 2 year old grandaughter would weigh nearly as much as me. This is really depressing. Surely the doctors wouldn't let that happen to me. Now I don't know what to do but I am seeing my gp in the morning so will talk about my concerns to her.
Hi Fiery, I hope you've talked to your GP by now. I'm sure it's something that can be dealt with easily. They will probably give you a feeding tube, which is no problem at all. Not painful, and well worth the inconvenience for a short time.
They can control your nutrition that way. I probably lost weight because they decided I needed to!
Hi Fiery. Had Chemo followed by op then more chemo 2 years ago. I returned to work after 6 month which was quite physical and I also was back dancing too. I have had very few problems and apart from a reduced appetite and the odd episode of reflux and dumping I can honestly say I feel fine. Good luck to you. Anne
Hi Fiery
You don't say how old you are -- this has a bearing.
I had an Ivor Lewis aged 47 . I am now 69.
The side effects were indeed grim but indisputably worth it for every minute of those 22 years.
Hi, I am 63 so not old but not young. I have always been pretty fit and walk my dogs for an hour a day. I am retired now and was hoping to enjoy it but this isn't what I had expected. I am glad I found this forum because you have all been there and will understand my fear and concerns. Thank you all x
Hi Fiery- I was in the same position as you so please see the answers I got to my Question- If you had the Ivor Lewis, do you regret it?
Based on the responses I got here, and the question to both my Oncologist and Surgeon:"If our positions were reversed, would you have this chemotherapy/surgery?, their responses were "Like a Shot" and "Yes" respectively.
I am scheduled for surgery on July 15th, scared, apprehensive, but believe it is my best shot at a long life. I know how you feel and you have my sympathy- It is hard to make yourself ill when you are well!!
Regards
Steve
I wish you all the very best for the 15th. I will be interested how you are coping. You are right about making yourself ill when you don't feel ill.
All the best
Nett
Thank you to everyone for your time at answering my questions. I appreciate all the answers because you have all been through this and the people that know how I feel, my fears and what it is really like to go through it. I appreciate your honesty, it is no good sugar coating it, I need to know the truth. I will keep you updated and know you will be here supporting me.
God bless you all x Nett
Hi Nett, Like many others on here, I had my op in Feb 2012, they found the cancer because I had been going for regular endoscopes over the last 15 years due to Barratts, I was diagnosed with T1 and told it was so small i wasn't required to have chemo etc. as the surgeon put it.....I`ve pencilled you in for 3 weeks time. The op went well, 2 days in ICU which is standard, yes I had needles stuck in me and feeding tubes, but this was to give the oesophagus time to heal. 2 weeks after the op I was discharged, and I still wasn't on solid meals.....the consultant said when you go home have a proper meal......but less than you used to.
Now 17 months later, still eating small meals, little but often and `grazing` between meals. I can now just about do everything I did before the op but slower.
Would I go through the op again.....yes, we all learn to eat differently and at times its a struggle, even now when we go out for a meal I still look at other peoples plates and think I could eat that.
I want to be like one the others who on this site say ive reached my 5th, 10th, 15th year.....
All the best our thoughts are with you.
Mick
Bless you Mick, thanks for taking the time to reply. That was very interesting and I think my op is going to be much the same and I hope it goes as well for me. I am having my PET scan on Friday 19th so I guess they can tell more from that. I will let you know how I am doing Nett x
fiery how are you doing ?
I was terrified before my surgery and I found the weeks before it the hardest thing of this whole carry on .
But ...I was incredibly well looked after .Pain was very well controlled ,and I was a little dazed /out of it for much of the time ,so stuff that sounds horrible ( nil by mouth for instance ) didn't impact on me .
My op was at St Thomas's in London and their standard procedure is to fit a feeding tube .
It's loads better than a NGT and I'm currently having top up feeds at night to supplement my rather poor eating and build me up prior to more chemo .
I'm 6 weeks post op .
Thinking of you .
Thank you violetqueen for your reply. I think I am going along the operation route. Mine will be done at Leicester Royal Infirmary although I live in Northampton..I have been to see the surgeon and I am waiting for a pre op assessment now. I am on my second lot of chemo and have one more to go. I don't know how I will cope after the op, I think that is my main worry, we just don't know how we will be with the eating and related problems.
How do you feel in yourself since the op, I guess 6 weeks isn't long. Do you feel weak? Are you able to do things for yourself or did you get some help. I think I am going to have the op and then get sent home and forgotten, and that would be about right.
I hope all is good with you and you continue to get stronger and move on to a long and happy life. I hope I can too.
This cancer is a bastard thing isn't it?
Hi fiery . From what I understand having the op is the only way they can be sure exactly what stage the cancer is ,how it's responded to the chemo and whether there are any lymph glands involved .
Do you know what type of op you are having ? I had a transhiatal one ,not so invasive as the Ivor Lewis and I think one recovers more quickly .
The hospital I was in allowed sips of water for a couple of days before they check whether the join is ok - the swallow rest . Funnily enough I wasn't really interested in sipping ,I suppose I wasn't thirsty because I was on a drip and a feed .And I could moisten my mouth with sponges ,or the staff did it for me if I was too tired .
I was scared of the swallow test but I needn't have been ,it's just 3 x a mouthful of water stuff and the staff talk you through it .
Regarding recovery I came out of hospital fighting fit ( bowels a bit unbalanced between the 2 ends of the spectrum ! ) but slowed down after about a week . .
I think the site of the surgery must have been numb in hospital and I've had a few pains . Controlled by painkillers ( dihydrocodeine and paracetomol .
My surgeon told me I'd be "self caring " on discharge and I am . I'm not hoovering or carrying shopping and I find bending over or down ( to the washing machine ,to get stuff out of low or high cupoards ) can cause me pain afterwards .
The eating is not too bad though I'm afraid I dont do enough of it . I ate more in hospital because the food was lovely and was delivered to you - no preparation,no washing up !
If they offer you fortisip drinks ,they're better cold or with ice .Forest Fruits isn't too bad . Make sure you have something to eat with them ,or before them - preferably a complex carbohydrate ,a soft flap jack .oatcake ,rice cake or something .
I hadn't really appreciated that the op means that your body doesn't absorb food very well .I'm a bit anemic now so i'm tired . Predicatably I've not got on well with prescribed iron tablets but bought some floradix today .
If there's anything you want to ask or know ( even if you think it's silly or trivial ) fire away . I felt so in the dark before the op !
PS definitely ask for a feeding tube ,they put it in during op and St Thomas's send you home with it - which is just as well as I'm having supplement feeds .
Did you have your op at St Thomas's in London? My op will be the Ivor Lewis I guess, not sure what yours is or how it differs. I am trying to find the best hospital for me and the surgery I want. The Royal Devon and Exeter do keyhole surgery but it would be difficult to get there
I had mine at St Thomas's and honestly can't praise them enough - go there if you can ! You will be so well looked after . And the food is fantastic ,the views stunning ,transport easy ,they have some accommodation for relatives at about £50 a night ( probably much in demand ) and the nurses are fabulous . I'll even come and visit , sit with you the night before ( I found that time a bit tricky ) if you like !
I was beyond terrified before the op ,partly because of numerous bad NHS experiences and I've totally regained my confidence now .
The transhiatal surgery involves less trauma to the chest and patients recover more quickly from it than the Ivor Lewis - or so I understand . Someone with more knowledge could probably advise .
Keep your chin up ,I find the post op bit better than the pre op . A few digestive problems to try and manage .But they are mostly manageable and I find much easier to cope with the anticipation and fear of the unknown .
Hi violetqueen,
I am going to ask if I can go to the Royal Devon and Exeter as they do keyhole(MIO). I think my hospital is going to be annoyed with me though because they have already sent me to Leicester to see the surgeon, but am I not allowed to make an informed choice that will be in my best interest? I will try and see what happens. I have another session of chemo to go in two weeks and the op should be within 6 weeks of that. What do you think? Do I have the right to ask?
Hi fiery, I was very keen to have minimally invasive surgery and met with my surgeon and Surgical nurse specialist to discuss it. There seem to be only a few centres in the Uk that do enough of these operations to develop expertise. It is possible that they might have to revert to an open procedure. I was advised that there is less risk of complications post-surgery with the Ivor-Lewis, stuff like leaking joint etc. I was fortunate to have two teams working on me due to neurological complications, and they completed my surgery in 2.5 hours!! I was fortunate to recover quickly and went back to work on a phased return at 7 weeks pst surgery, although I am back off work during chemo.
You certainly have the right to explore all options, and good luck.
Good question fiery ,I would have thought you had the right to ask . I don't know the practicalties of this - I've found these links
nhs.uk/choiceinthenhs/Pages...
nhs.uk/choiceinthenhs/Pages...
which might help .
I've not studied them but they seem to me to suggest that you need to speak to your GP and that as the next step the Clinical Commisioning Group . I think you might be able to explain that you feel keyhole surgery would be best course of action for you ,especially as your cancer seems to have been caught so early .
"Who is responsible for
offering me this choice?
First, speak to your GP or to the dentist or optometrist
who is referring you.
If they do not offer you a choice, contact your Clinical
Commissioning Group to discuss what choices you have.
Your Clinical Commissioning Group must make sure that
you have this choice. "
But to be honest ,for all I know this advice may have been overtaken by new legislation /procedures .But I presume your GP or surgeon /consultant could advise . Or possibly talk it through with your specialist nurse - you may need to ask who that is if you've not been introduced .
Also I guess that although key hole surgery sounds attractive on the grounds that it is less invasive maybe you need to try and find out how it is ranked as a treatment ?
It's tough making these decisions - I really feel for you . Good Luck .
Hi Violetqueen,
I have researched this quite a bit and the mortality rate is about the same. I am just thinking that the trauma to the body will be easier for me to cope with. I will see what happens and let you know how it all goes. I am feeling 100% well at the moment and even my gp remarked on how well I looked. Thank you for that information on the Clinical Commissioning Group.
Hope you are doing ok yourself
Nett
It is easy for me to say this because it is not my operation, but I personally would not get hung up on the technicalities of what kind of operation they do. There are surgeons around who do keyhole surgery, which I think amounts to about 15-20% of the total operations. You look better on the outside afterwards, but inside the work is much the same. The surgery can take longer with keyhole, but patients can often leave hospital earlier. In the earlier days there were some teething problems (eg with leaking joints) but I think that these have largely been resolved.
The real criteria for whether it is going to be successful is how early the tumour(s) have been caught, whether it / they are in a particularly difficult location, how fit you yourself are as a patient, and , to some extent, how many lymph nodes are removed to prevent future spread. I have not mentioned the experience of the surgeon, but there is a trend for this surgery to take place in specialist centres where the surgeons will undertake higher volumes of surgery -the more they do, the better their skills and experience.
If it were my personal choice I would not travel across the country simply for the prospect of keyhole surgery.
There is a special relationship between patient and surgeon, and I know many patients (including me) who are profoundly grateful for what their surgery has meant for them. So this trust is the most fundamental thing in the whole process.
Hi all,
I haven't posted for a long time but come on here regularly to keep up with everyone's progress. My original question was 'should I have surgery'. Well I did and I am now 7 1/2 months on. I like everyone else I have some problems, late dumping mostly but this is getting better as I learn what causes it and managing it better. I eat fairly well but i'm now back to my pre-chemo weight. I can't say that eating is very high on my list of priorities, it doesn't hurt to eat and I have no problems with swallowing, I can eat whatever I fancy, steak, bread anything, I just don't find it a pleasurable experience. I go back to the hospital for a follow up in August. If somebody asked me whether they should have the op I would say a big 'YES'. This forum has helped a lot with any worries I have had and I am pleased that I found it. I post OPA info on facebook, I think people should be made more aware of this cancer. I wish you all well Nett
It is November 2016 I am in your situation I read. Did you survive??
Did you survive??
did you survive
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