Oesophageal Patients Association

Weight loss after an oesophagectomy

There has just been a medical paper published that confirms what many people here know instinctively - that weight loss is common after an oesophagectomy, and that the digestive effects linger on for a long time.

onlinelibrary.wiley.com/doi...

I hope that the link works, and there is no open access to the full document, but the conclusions were:

In total, 92 of 104 10‐year survivors (88·5 per cent) responded to the questionnaires. Weight loss was greatest within 6 months of surgery. Patients with eating difficulties with or without weight loss reported clinically and statistically significantly worsened HRQoL [health-related quality of life] in almost all aspects. The largest MD [average/mean difference?] was seen between 5 and 10 years after surgery for global quality of life, physical, role and social function (MD –22 to –30), as well for fatigue, nausea, dyspnoea [shortness of breath], insomnia, appetite loss and diarrhoea (MD 24–36).

I do not think that this report is likely to cheer anybody up, but it does emphasise that if you have these problems you are not alone. And at least there is now something in the form of a medial reference source that might persuade the treatment centres to adopt a more systematic approach to dealing with the long term, often gastroenterological-based, symptoms that last long after the cancer aspects have been resolved.

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Thanks Alan. It's a sobering read and, I feel, raises issues that should be discussed with patients before treatment. All too often, although weight loss is mentioned, the effect on quality of life of digestive issues is rather glossed over. I would welcome others' views.

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I agree Kate. It breaks my heart when my husband says if he had been better warned of the after effects of his Ivor Lewis he would not have gone through the op. We are only 11 months post chemo, op and chyle leak, and day to day can be a struggle. It does help to hear others shared thoughts and we appreciate the advice and support within this community. Awareness and Knowledge are key factors in coming to terms with the changes thrust upon us.

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Tell him to hang on in there! Personally from my experience I think the chyle leak was absolutely devastating and I felt so drained after! It wasn’t just weight I’d lost but muscle, protein,iron supplies and an immune system. The surgeons said because of the chyle leak it would take me much longer to recover maybe up to two years. I’m now two years post surgery and when I look back to how I felt 11 months ago I can see I have more stamina and more energy.

There is definitely a before and after oesophagectomy life. I have to budget my energy levels more than I would like, I have to plan my food carefully each day. I’m not like other people in that respect.

But I am an upcycled vintage girl! Mostly with preparation I can live mostly how I want. I sometimes resent this slightly irksome way of eating sleeping etc. I live in a Cornish Village and when I look at some of the holiday makers struggling to walk around the hilly streets as they are so unfit through lifestyle I realise I’m not that badly off! So good luck to your husband wish him the best and that I think with a bit of thought he’ll recover and continue to improve the quality of his life. Really he’s still at the start and has the summer ahead!

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That is so true - it is a difficult balance, I live in the Lake District and walk my dogs twice a day and as you say. I see holiday makers struggling and it makes me grateful for what I can do but there are always times when I would just love to go out in the evening for a meal with friends but we have got around that by being ‘ladies that lunch’ albeit a tiny portion. Things do get better but it is a hard slog

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I agree with your husband. Two+ years after my surgery, had I known what a difference in quality of life I would have declined the surgery and taken my chances

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If you had asked me 3 years after the op I might have agreed now 8 years on I have learnt to manage my energy and other side effects and am so glad I did have the op.

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So pleased this is being talked about ,Its a hard road to take and have all the problems you have shown ,I am so glad i am still here but its a hard fight at times and when i see people say they are eating well i wonder where im going wrong if i have a small dish Baby size im lucky if i dont have problems with pain and more ,im so glad im here but my mood swings can be bad and some depression ,I have been reading other,s on here since i had my op on 20th Aug 2016 ,So thank you for all your letters on here i have been reading them every day but didnt like to send one as i was not sure how to say it .Thank you to you all Marilyn

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A really interesting read and, in a way, also reassuring. This can often be a lonely and tough journey. I think it would be good if GPs and those we see for our check ups post op, were aware of this report so that they can be more supportive rather than looking a little bemused when I mention any difficulties I experience (3 yrs post op). I struggle with maintaining weight (I am slightly underweight) in a world where the focus is on losing it - my stress is I can't put it on and can't afford to lose any more. As well as the reduced eating issues, I often feel nauseous and have a super sensitive little tummy that can object painfully if I'm even slightly worried about anything or have eaten something that doesn't quite agree. I am able to live a full and active life - I run and cycle - but it's much ,much harder than it used to be and my breathing is often noisy and wheezy. Fatigue is frustrating - all of a sudden just needing to be 'out if it'! People generally assume that because I look so well and am so active that I'm recovered, and of course I'm hugely grateful for every extra moment, but it would also be good to better supported to help with those everyday issues.

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I could echo all that Babs has said. Yes I can do loads of things but definitely it impacts on my everyday life it’s a bit hard to explain my needs to others as I appear well and am really. However if I don’t meet my needs I really know it. Friday I had a brilliant ballet class. Yesterday was a wash out through late dumping syndrome! And I not really know what triggered it. To others I look perfectly normal and strangers say to me how lucky I am to be so slim!

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Totally understand how you are feeling x

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Thanks for sharing Alan

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Alan - I’d like to get your advice on weight gain drugs. I’ve been using them and they have completely transformed my ability to eat sufficiently calories for the better. Any advice would be much appreciated on how to get the message across to doctors and dietitians.

I don’t understand why anti-depressants with their well recorded side effect of weight gain are not being talked about? Also, they ensure you get a good nights sleep and massively reduce reflux during sleeping. It seems a no-brainer to me.

Many thanks

Jay

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Hi Jay - I do not know enough about weight gain drugs to be able to give any opinion, really, other than to think it would be important to have a doctor advising about them, and if they are anti-depressants, that aspect of their effects /side-effects would have to be taken into account as well. I am glad they have worked for you though.

On the weight issue generally, we have always thought that people might well settle down to a new, normal, lower weight which would not be unhealthy in itself, but there are cases where the lack of weight does seem to make people vulnerable to what would normally be minor setbacks. It all depends on what else is working well in the digestive system I suppose.

I do sympathise with the thought that if only one had known what it would be like, one would not have had the operation in the first place. In practice, though, the tumour would have grown and caused terminal illness problems, but it was not feeling like that to the individual when the cancer was first diagnosed, so the after-effects of the surgery often seem worse than the original symptoms. It does take an awful lot of resilience to cope with the after-effects on a long term basis. And the longer it goes on, the less likely it seems that expert help is available, and there does seem to be a great deal of self-help that is needed to work out the best diet and eating patterns, which can vary very much amongst individuals, and from day to day.

It does illustrate how long a period the road to optimum recovery can be, and how adjustments seem to be needed in diet, medication etc long after the surgeons have finished their work.

I was not able to read the full article either by the way.

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I'm sorry to hear how so many of you or partners have struggled post surgery with this - I am very fortunate in respect to my full oesphagectomy last Feb 2017 at age 43 - I am thinking this may be due to having had the keyhole surgery rather than the Ivor Lewis - although its the same surgery - my eating has been very good and I've not in fact not lost any weight (which I was really hoping for given that I was over weight to begin with) I also have a great appetite which has not been suppressed. I have to mentally tell myself about portion control and that is enough given my new internal plumbing - otherwise I would probably over eat. The only thing I now have to deal with post surgery/chemo is my hypo's/dumping something completely new but I have now a glucose monitor and learning to sense the symptoms before I get to dangerously low so I can rectify it. Other than that I glad to be here and adjusting to this 'new kind of normal'..and learning about how my body functions post surgery.

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Thanks Alan. That is so very helpful as are the posts from people who have read it. My husband is 7 months post Ivor Lewis and finished chemo in January. His issue is not so much eating although he does suffer from dumping. His main struggle is to do with his breathing. Having managed the year of treatment - chemo, op, chemo - his breathing became more difficult once all the treatment was finished. He also has a low heart rate and is currently awaiting an appointment with a cardiologist. It is frustrating that with each new issue he has to go back to the beginning and be referred by his GP to a new consultant. A shame the oncologist can't just refer over without having to go through the whole referral process again.

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I've tried opening the report, can read the first page but the following pages are blurred. It looks like you have to pay to read the report-has anyone else found the same?

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Hello Everyone,

I agree with almost everything that all of us Post Ivor Lewis survivors are saying, the one thing I disagree with most of all is the 'I wish I had never had the operation and took my chances' type of comment, although I do understand.

I am two and a half years post op, I fight to stay at seven stone (down from ten and a half) I constantly suffer from dumping which makes me depressed, I have gone from a really active physically fit man to a wheezy out of breath lacking stamina sort of bloke. However, I bless the day I met Professor George Hannah and his team who gave me a life extension. And I will improve my stamina and fitness but I know it will take time.

As difficult as it sometimes is I still think a positive attitude always helps.

I agree that the information we are given re post op eating is woefully inadequate at least this report reassures us all that we are not alone.

My problem is I crave foods that I used to love and think I will just try a little, but I still get awful dumping, but I am really happy to be alive.

Good Luck everyone and keep the old chin up!

Richard

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Hi guys !! On behalf of my hubby it really is reassuring to hear all your issues . You realise your not alone !

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Alan,

Many thanks.

I am now 7 years post-op and throughout, have had problems with eating, though I manage to eat enough to maintain my body weight at some stone and a half below my pre-op level, and I rather suspect that I was overweight to that extent anyway. However, it is hard work and the greatest loss has been that I no longer enjoy food to any extent, except perhaps sweet items. I sometimes say that if I could live without eating, I would do so. Just in passing, I was told by the surgeon who carried out my operation that I would eventually manage to eat a starter and a main course or the latter and a sweet. In reality, I can do nothing of the sort, at least with portions which the majority would find normal.

However, based upon the results of the medical survey upon which you have commented, I would guess that I would fall into the group which has come out of the process reasonably well and I am heard to say that had I not had the operation, I would long since have been 6 feet under.

Kind regards to all,

Speakman.

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I am back at my pre surgery weight - I have to be careful what I eat but my life changed hugely for the better when I had my two children within 5 years of the surgery - yes, I am not the same person I was, I did get other severe issues from the surgery that affect every day of my life but I know that for me having chemo and then the total oesopghagectomy was the right thing for me.

As I write this, my 6 year old daughter is making me a birthday card and my 7 year old told me that our combined ages (my son, daughter, husband and my age tomorrow) will be 100 until his birthday, this has been part of my life for over a quarter of it at this stage but you can not put a price on still being here and having life experiences.

Aoife

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That puts it into perspective, doesn't it! Glad it is going well!

Alan

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Thanks for info.

I had my operation Nov 2015 and I have had changing issues over that time. Im now dealing with asperations which was not an issue until earlier this year.

When I started asking questions about my life after surgery my surgeon stopped me mid sentence and said..."we are not doing this to better your quality of life... we are doing this to save your life! " from that day on I knew it was going to be a rough road ahead but I always come back to "hey im alive "!!!!! I really appreciated his honesty, it really put it into perspective!

They told me the first time I had a 10% chance that chemo radiation would allow me to have the surgery. A year later I had a reoccurance and they gave me less then a year to live. Again 10% chance chemo would get me there! Iv'e made it through both of those low odds and im still kickin so quality of life is what you make of it.

Take each day one at a time! 8)

Good luck out there!

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