Oesophageal Patients Association
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Need some information regarding Ivor Lewis procedure

Hi everyone.

Husband had a very positive meeting with his surgical team today. His tumour has shrunk quite a bit (we weren't sure that it had) and we got a date for his operation. He has also been asked to participate in asked clinical trial, hence my post.

I would like to hear from anyone who has had experience of an oesophagectomy as either open surgery or key hole. Or if anyone has had a combination of them both.

I'm particularly interested to find out what recovery was like and positives and negatives please if that's possible.

Obviously if hubby goes for the clinical trial we won't find out which procedure he would be getting until after the event, but would be greatful for any input from those of you who have had expert of this.

Thanks in advance.

Lucy x

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Hi I’m 7 weeks post ivor Lewis and I am recovering slowly. I guess everyone heals differently I was open surgery so 2 cuts one from navel to ribs and 1 somewhere round my back - can’t see it lol - but 77 staples in total removed 7 days after operation.

Soooo how do I feel? Well not had much outright pain to be fair but obviously uncomfortable

Area on right hand side near lower ribs niggles and worst is back of my right shoulder which really gets sore. If I do much. 2 hours of wrapping Xmas pressies yesterday was too much.

I manage to do most things again now, I can manage to walk a few miles so long as I don’t rush but after I do feel very tired

Eating and drinking is a bit of a pain - as everyone says ‘a new normal’ to get used to. I’m finding I eat and drink to the clock so as to avoid dumping - I seem to get early dumping- and to get enough calories into me. I am staying stable so far with my weight - but a bit worried how I’ll cope going back to a physical job.

On the whole I feel ok but it is a bit of a rollercoaster - was hoping yesterday to go to an event at my kids school but felt naff - day before I would have been good to go lol.

Started driving again this week as well the sore bits aren’t near the seat belt so I can do an emergency stop safely.

Hope this is some help to you, everyone is different. Don’t know if I am a quick healer or slow as I have no benchmark to put myself against.

All the best with the operation it’s scareier before than after, I can see a future once more and your husband will as well

If you have any specific questions I can help with please just ask

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I was part of that trial too! You didn't know which you were going to have and didn't find out until after the dressings were taken off! I found I had had open! It really didn't matter to me either at the time or afterwards. The trial was a comparison between open or keyhole for the abdominal incision only. Despite post operative complications which had nothing to do with the trial I have made a very good recovery. Yes there are some adaptions to be made in how one eats sleeps etc and side effects need managing but otherwise life goes on much as before except I am so pleased to be here and don't take it for granted! Good luck with surgery and the recovery!

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I had keyhole surgery at bottom of stomach to free it and then a large cut at the back of my right shoulder. In hospital 10 days and main discomfort was position of lung drain in my back. Had me up after a day sitting in a chair and then walking down the corridors.Developed a cough probably do to lung being deflated or part of the rib taken out ,which caused more discomfort. After 4 months still got pain on right chest area and not able to lift anything heavy but able to walk for miles.

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Hi Lucy!

Great news about your husband! We are not at that stage yet as my husband has only just started chemo, so I'm afraid I can't answer your question. I'm sure there are lots who will be able to offer their experiences though. Whatever method, I wish you both all the best and am thinking of you. Please do let us know how things go. Very best wishes, Kate x

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Hi,

11 years since surgery, combination of keyhole in lower stomach area and open surgery above.

The research trial may be for the chemotherapy / radiotherapy rather than the surgery procedure as consultants have their prefered methods planned ahead and is dependant on individual cases.

What ever the surgery method, recovery can be slow as has huge impact on the body, do not worry about the time it takes to get fitness back as it will happen slowly, months rather than weeks is normal.

positive is that surgery works to remove the cancer, 11 years later I am fit and well, negative none other than unable to have a pint of ale and large steak anymore.

please do keep us updated and if you have more info on the trial please do post as well.

We at opa.org.uk are here to help and offer support.

Best wishes and kindest regards,

Dave C

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Hi Dave

The trial is definitely for surgery and not chemo. My husband has only just over a week to go on his last chemo cycle so the trial isn't do that.

It's definitely a surgical trial. we spoke to the surgeon yesterday and he's asked us about it. He basically go put through a job interview in return 😂😂. It's good to be informed.. lol

Thanks for your reply

Lucy.

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Hi Lucy

have you tried the OPA's helpline? We have volunteers willing and able to talk to you about the whole process. They have almost all been through it

Regards

Haward

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Thank you everyone for you replies. Is definitely given us something to think.

Good to hear from someone involved in the trial too. At the end of the day the objective is still the same they are jus looking at the recovery periods.

Thanks again x

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Lucy

I had a Transchiatal Oesophagectomy (that's a mouthful on it's own) in St Thomas's with the absolutely wonderful James Gossage. Happy to provide any details you wish. Just let me know? I am now off out for the day. But will respond later (if required)

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Thanks Bruce. Would really appreciate that if you could please..

Thanks

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Lucy

This was my experience:

I was done privately and chose James Gossage. For me (and many others) that was an excellent choice. James explains everything with patience and tailored to the patients understanding. Just that interaction makes a massive positive difference.

I was told that Transchiatal suited best, my disease. It offered me the best chance and quickest recovery. I am fairly small (no jokes please) being 5’ 4” and not too wide have little room to work on.

I did not have any ribs broken or left arm stretched. It was all done via my neck and middle leaving two very attractive scars.

I was in St Thomas’s for 10 days then home with zero complications.

Now, the good bits.

I did not and do not suffer from reflux after the surgery. I can sleep without any aids and on either side.

I did develop ‘severe reactive hypoglycaemia’ so sweet stuff is not wise for me. I believe this is for life and fairly common.

I lost weight and have remained at my new weight 9 stone and am happy with that.

I have had to have several stretches but these are painless.

Most of my downsides, I relate to the pre & post op chemotherapy that (for me) was hellish. My hypoglycaemia has resulted in some collapses and a breaking my spine in two places. That still causes pain. I wish I had understood that more before waking up back in hospital.

Feel free to ask anymore anytime.

Good luck

Bruce

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Bruce thank you so much. Your posts never fail to inform, uplift or reassure me. Always detailed and to the point. With a glint of humour which has helped myself and my husband through this.

Definitely given us something to think about.

Thank you

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Lucy

That is very kind of you. Thank you. I keep reading your original post and see myself and my wife sat in James Gossage's consulting room, feeling terrified and hanging on every word, which we both promptly forgot, then had to go back and ask again.

Were I to have my time again. I would focus on the "what comes after surgery". At the time I was only focused on surviving as long as possible. I would grab at any words that gave me hope and missed the (what I now realise is) the really important bits.

In some ways you are a passenger now and will go with the flow and the consultant(s). But do try and ask them about what it is like after the surgery and remember they only have anecdotal evidence of this (that is very important) they have not lived it at our end.

These are hard, hard miles as you adjust both physically and mentally to your new plumbing and it's impact. Always keep in mind, right at the front..... IT DOES GET BETTER AND IT DOES GET EASIER. So, whatever phase you are in, at that time, think ahead t when it will be better. It can very easily consume you. Helpful hints like "try and eat" can lead to an irrational desire to punch people ;^) as can questions like "how do you feel today?" Absolutely shit. You? That can be a show stopper.

Three years down the line and I play golf every week (18 holes). Work full time in the City, and most importantly have seen my daughters grow into young women and my grand children grow.

For my wife and daughters it has been so much harder than we ever imagined. But we have survived.

I do wish you well and do keep posting and asking the questions.

Bruce

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Hi Lucy,

I had total keyhole surgery (not a combination). When I read up about it at the time there was some concern in the scientific literature about whether the full keyhole procedure was as effective as open surgery (getting all the cancer). Wherease endosccopc surgery is gaining popularity, it seems that open surgery is still used most frequently in the UK, and I guess there may be some lingering concerns if centres continue to use I-L and are looking at keeping open surgery at the tumour end but looking at endoscopic surgery for the gastrectomy part (based on replies below). I found a surgical trial (maybe this is the one?) that is looking at open surgery vs partial endoscopic surgery (for the gastreectomy part) vs total endoscopic surgery that is a pilot study in Bristol and Plymouth. It may have moved on from a pilot to a full late stage trial by now (cut and paste the link below into your browser to view)...

trialsjournal.biomedcentral...

The background section to the publication provides a good overview of the procedures and problems patients face post-surgery. Interestingly, it doesn't mention overall outcomes (cancer recurrence) but is focusing on post-operative complications, quality of life, etc.

Out of interest there is an ongoing study in China that is worth having a read about in terms of background (see below)

bmjopen.bmj.com/content/5/1...

My procedure was certainly less traumatic, although it still took me a long time to recover given the nature of the gastro-oesophagectomy/pre and post chemo (I was 52 at the time and it's been 5 years since I had the op). However, I don't experience any of the long-term issues associated with the open procedure relating to the wound area that I read about on here. I also have only 4 or 5 very faint and small scars.

Good luck !

David

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Thank you David. Yes it is the Romio trial you linked in your reply.

Husband is being treated in Edinburgh so they are linking up data with Bristol and Southampton. I guess I just want to know if both types are as effective as one another to get all the cancer out. If he's not opened up could they miss some of it? They are relying on wherever they point the camera to see things if it's keyhole, where as if it was open then they could see the whole picture. Thats my only concern.

Maybe I'm looking too much into it. At the end of the day husbands pre-op chemo has done what it was meant to do and this it just the next necessary part to chop out the tumour.

Thank you for your reply.

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Hi Lucy,

It looks like the endoscopic procedure would be limited to the gastrectomy as you're in Edinburgh (the full endosccopy was only listed for Bristol and Plymouth - although the trial may have moved on). I had mine in Wrexham and my surgeon was already very experienced in endoscopic surgery and the G-O procedure. If you know who you surgeon is you can get an idea of experience from ther profile on the net. Also it's worth asking them directly.

All the best,

David

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My Dad had Ivor Lewis back in the summer (you can have a read of my previous posts). He recovered really well immediately post op, only spent 6 days in hospital and was having soup after a couple of days. His main setbacks were caused by post op chemo to be honest. He had a partial oesophagectomy and only a small amount 'shaved' off his stomach to reshape it but is now eating as much as he used to before becoming ill albeit spread over a few more meals and is beginning to exercise again (walking with me and my dogs, using his exercise bike and home gym). He is gradually putting weight back on and is generally doing really well. It's a scary process but it's a means to an end x

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Hi Lucy

My Tony had keyhole but still had forty plus clips including stitches front and back along with the usual tubes , chest drains etc everywhere! I helped nurse patients in the past with “open” Oesophajectomy and in both cases patients were told that they would feel like they had been “run over by a bus which then reversed” ! I don’t think my hubby believed that prior to op but has suffered so much since that he would holy agree now! What you have to remember is that either way , no two patients have entirely the same recovery ( issues ) . Tony sailed through the operation but has been a nightmare since with endless repeated “stretches “ whilst some don’t have that problem at all. I really really hope that for both of you things go fairly smoothly, but be strong because no one can ever really prepare you for life after Ivor Lewis .

Good luck

Debbie x

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😀

Just want to say thank you to you all for your open, honest and detailed comments on this. We still haven't decided what to do yet and even if husband decides to be part of the trial we won't know what group he will be in or what procedure he will have had for a bit 7 to 10 days after the event.

Either way we both want Tom the tumour (That's his Sunday name, he's normally referred to as the "wee b@st@rd") removed then we can get on with the "new normal".

THanks a million guys. you're all amazing! 👏👍💪👏👍💪

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Hi again

If it’s any consolation the good news was that we were told at four week follow up that all the cancer was removed ...he did say that they also found it in the nerve endings but were told right from the outset that Tony would have ( Chemo Surgery then post op Chemo ) I don’t know how others feel but THAT to me is one of the most important things to make sure he has !!! We were told that there is only posit research with that regime . It’s like an “insurance “. Sadly we know from close friends the result of not having post op Chemo sometimes. If like it sounds , your hubby is the a fit guy and positive just like Tony before all this started .. then that is going to put him in good stead to cope with it all . However I will say that from witnessing both “open” and “keyhole “ surgeries, although both major major ops. The latter is definitely preferable as far less of a wound .

All the best and keep in touch!!

Debbie xx

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Hi Debbie.

Husband won't be having post op chemo. He was given it all up front. If need be he will be offered radiotherapy after the pathology has come back.

We've asked several times about post op chemo and the oncologist, surgical team, CNS have all said it wouldn't be necessary. I know that is the "gold standard" if you like, but each MDT has their own thoughts, opinions and recommemdations I guess so we have to trust them.

Husband had 4 cycles of very high doses of his chemo, hence the kidney problems at the start. It was recommended that he got the hard stuff whilst he was still fit and healthy enough instead if after the op when he was in recovery.

From my own research,(believe me I've looked through what feels like every piece of work written) it seems that more chemo up front rather than post-op is becoming more popular.

I suppose only time will tell, but at them moment between the information fromantic the MDT and my own research I have no reason to disbelieve them.

Thanks again.

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Hi Lucy ,so pleased to hear your husband has finished his chemo and has a date for his operation which ever one he chooses to have I hope it all goes well for him and you keep posting and keep us up to date . My husband has just had his 4 cycle of chemo . He had CT scan after his 3rd and were very pleased that the tumour has shrunk quite a lot that he is back eating soft food although still has NG tube in for feeding . He still has another 2cycles to go before he gets laparoscopy before they do the operation , then 3cycles after . The Beatson must do things different from Edinburgh . I wish you both all the best for Christmas and New Year . Jane .

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Post op chemo is really tough so if the docs think it's as effective having it all first then that can only be a good thing x

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Hi

So far 3 weeks in out of 9 solid for post op and no where near as bad as pre op Chemo! That was EOX 4 cycles continuous with the awful big red infusion via cannula along with others at the start of each cycle ,then tablet form 4 per day. At least this time there is no heavy syringe but there is an increase in tablets to 6 a day. Fingers crossed Chemo continues with less side affects. I think each area in the country follows a slightly different approach, but so long as the result is positive that’s all that matters.

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