Oesophageal Patients Association
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Oesophaegectomy and Linx band

Greetings and Happy New Year,

I have been reading this forum for past few hours and really helpful it is.

I have HH GERD and have acid reflux for as long as I can remember in childhood. I am 39 male. T1 adinocarcinoma was detected in biopsy while investigating for reflux in Oct 2017. Had preoperative assessment on 4th Jan18 and have IL surgery on 6th Feb in Aberdeen.

I have had downtime of 8 months (5months in bed) many years back due to an accident and associated surgeries. So been through that and have experience of hospital major surgery and recovery. However I was bachelor and active at that time and now with responsibility for wife and two primary age children while laziness crept to keep myself fit.

I watched IL surgery video and was but upset about the permanent changes it does. But hope for the best.

My main concern is the reflux continuation after surgery, as is evident from other people's experiences. The surgeon has agreed to my disposition that that the cancer is outcome of the long term reflux.

While I read GERD and lesser of HH patients done Linx installation, are there are cases where Linx was installed in patients undergone Oesophagectomy to counter reflux?

Any information will be really useful.

Thank you.

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I was diagnosed at a later stage (3 query 4) squamous cell but I was only 32 when I was diagnosed. I had my total esophagectomy on the 9th of Ferruary 2007 (I had chemo first). I do have a life afterwards, both my children were born before I turned a 5 year survivor and I am an 11 year survivor at this stage. I am sorry that I cannot really help with your questions but just to reassure you that you can be an active parent and work post surgery.

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Thanks for the kind words. Encouraging.

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I was in the same position as you with stage one adinocarcinoma 11 years ago. This was also caused by reflux since my early teens. After the operation I had very little reflux but I do take daily PPI and Gaviscon at night if needed usually after eating to late. It takes time to recover from the operation but you will make a good recovery and with minor adjustments lead a normal active life.

A mate of mine had the operation aged 37 18 years ago and he is a very competent cyclist training at quite a high level so at your age and at stage one you will do well.

All the best

Phil

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Thanks Phil. Good to see analogue comparison here. Very useful. Thanks for the encouraging words.

To be honest I hate the reflux and hate is a very strong word which I never used.

I am keen to go for LINX implant on my own funding when I get back to work when oil industry recovers.

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As far as I am aware, the Linx system has not been used after an oesophagectomy, primarily because it is designed to re-create the valve effect of the lower oesophageal sphincter LOS) on a normal digestive system, and when you have had an oesophagectomy your LOS will likely have been removed, creating a 'stomach' of a very different shape. I think there might be a risk of the Linx slipping out of position, amongst other things.

Aberdeen (under surgeon Ken Park) was a place where the Linx was first used in Scotland, so they should be able to advise you.

After an oesophagectomy, the amount of acid reflux you are likely to have will depend to some extent on how much of your stomach has been left in place. The less stomach you have, the less acid you will reflux. There is also a potential issue of bile reflux, but that is a separate issue.

I think that how reflux is countered is an issue after these operations. For most people, taking Omeprazole or an equivalent PPI for acid, or an alternative medication for bile reflux, is enough, but on the basis that if individuals do not react well to a certain type of PPI, there are variations.

Anti-reflux surgery often means wrapping the top part of the stomach around the base of the oesophagus to re-create a valve effect, but, again, to the best of my knowledge, this is not undertaken/possible with an oesophagectomy.

A very unusual technique, Merindino interposition, does involve inserting a section of colon to replace the oesophagus, but that is rarely undertaken nowadays, but is apparently meant to improve potential reflux, but the LOS will have been taken away in any event, and I think that surgically there are probably more risks than with a conventional oesophagectomy.

The surgeon should remove those parts of your oesophagus that are affected, and, assuming that you have been suffering from Barrett's Oesophagus, they might well remove all those affected parts as well, depending on the margins involved.

I think that technically you are right that there is still a health risk from reflux after an oesophagectomy notwithstanding that developing future problems would be rare. It is a slow growing thing, but at 39 years of age you are relatively young for this problem and with many years of life ahead of you.

I suspect that your priority is to ask the surgeon's advice about long term reflux (and perhaps they will explain exactly where the cancer has developed - probably near the stomach junction?). Concentrate on the anti-cancer surgery for now (and the outcomes at this early stage are good), endeavour for a good recovery period and adjustment in eating habits, and then, at a future stage, monitor any medication you are given for reflux.

This is speculation, but I think that if you did suffer future problems along the line with renewed Barrett's Oesophagus, and it transpired also to have dysplasia (high grade dysplasia is the precursor to adenocarcinoma), the cells concerned might potentially be treated by radio frequency ablation.

Like all pre-surgery explanations, complications are not automatic, and for many patients this surgery can take place without the issues that people describe on this forum. That does not mean that it will be plain sailing of course, but yours has been caught at a good early stage. It is natural to worry about complications in the future, and it is your health and body that is involved, but personally I think the risks are quite a long way into the distance and small enough that you should not dwell on them unduly. The people who do best after these operations are those who understand the issues surrounding their problems, but do not dwell on them to a point where it could be described as obsessive. I do not think you are at risk of that, and it seems that you are reflecting on the various possibilities in a very sensible and understandable way.

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I also was T1 adenocarcinoma and 4 and a half years ago had an Ivor Lewis oesophagectomy and a quarter of my stomach removed. The outcome for me has been excellent and I have no reflux whatsoever following the operation. I also sleep well with just 2 pillows. I take 30mg of Lansoprazole each morning. I've never heard of Linx. I had a wonderful surgeon called Bill Allum at the Royal Marsden Chelsea. My recovery was slow and I was on a trial drug - Bevasuzamub, during my chemo treatment. You are young ( I was 61) and will probably fare much better but having said that we are all different and react differently to chemo/treatments etc. Good luck. Love Angi xx

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I agree completely with Alan.

The Linx has been designed for normal anatomy --- but maybe your team are up for some pioneering experimentation - think long and hard about that!

The post-op reflux is, for most, the price of survival and to a considerable extent it can be managed by lifestyle adjustments.

Henceforth you will no longer have a transition area from stomach-lining cells to esophagus-lining cells and so will no longer be at risk from reflux metaphasia there. The extent to which post-op acid/bile reflux can induce a recurrence of malignancy elsewhere is completely unknown, but is obviously a theoretical possibility.

The prime risk will be inhalation pneumonia.

I recommend that, after the operation you quiz the surgeon in detail as to exactly what he did:-

Where was the tumour exactly (upper/mid/lower) and how large?

How much Oesophagus was removed?

Did he have to excise any portion of the stomach in order to achieve the requisite margins?

Was he able to create any small pouch capacity in the pull-up?

If he had to create a cervical anastomosis how short was the Oesophageal stump?

Was there any collateral damage to the Left Recurrent Laryngeal nerve? (you may not get an answer to that!)

Was the anastomosis stitched or stapled?

Did he preserve the Gall Bladder?

How extensive was the Vagotomy?

How many Lymph nodes were harvested?

How did the re inflation of the right lung go?

Time in: Theatre/ICU/HDU/Ward?

Chemo?

If you are willing to get that involved then this complete history will empower you to understand what you have been left with and how to manage it. Crucially you will have a good stab at understanding the origin of any problems which manifest over time, as opposed to thrashing about in the dark, constantly worrying. Ignorance is not bliss.

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Thanks gutlesswonder for your handy questions. Today I had my first follow up appointment and I have handed in a letter with 17 points requesting for information. The clinic was running late and dr has informed me that he will send me more details later. The cervical anastomosis is a third stage if required; which was not the case in my surgery (which was a two stage).

Thanks again.

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Had surgery on 6th Feb. It was success on removal on cancer. Next 5 years shall tell if that holds true.

Had a rollercoaster ride. Kissed the death multiple times and back to tell the tale. Will make a separate detailed post on that with wife's help.

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