Surviving Oesophageal Cancer

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Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.

I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.

Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.

All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.

I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.

All the best

Crystal

FormerMember over 15 years ago

Hi Woody,

Great to hear from you - R&R in down under is ok with us but could be on the long term plan list.
Will be thinking of you on monday, your next R&R will be when you get home and believe you me it will be the greatest place on earth. The old saying "there's no place like home" takes on a whole new dimension! However the specialist hospital staff all deserve medals and you will no doubt be in quite a few different places over the next few days (I visited Hong Kong, Singapore, and a stopover in Sydney - all without leaving my bed - amazing) All the best from Ben and Sharon.

Hi Netty,
Boy you are one tough cookie! Infection, pneumonia, piece of cake! I take my hat off to you. A great feeling to return home but you do feel a bit deserted and cast out in the wilderness with nothing happening and wondering if what you are doing is "normal" .That's the beauty of this site where there are plenty of others who have already walked this (or a similar) path. Wish I had discovered it sooner so don't be shy about asking questions as the answers you get are probably better than you will get from your Drs (unless of course they have had a personal trip in the Ivor Lewis plumbing van)
The eating thing takes a while (this from one of the most impatient human on the planet) don't be surprised if you start losing weight and just want to blob/crash out at the drop of a hat - it's ok - youré allowed!
Anyway congratulations on your prgress to date. You have an excellent attitude lots of people here for support.
Cheers. Ben

Hi Crystal,
The eating part of things is still a lottery and so far I havn't even picked up a minor division prize but I keep on buying lots of little tickets each day because as we all know you have to be in to win. I still can't put on weight and I eat every high calorie piece of food I can find.Seems like the dumping (which happens at random) seems to defeat my weight gaining efforts. Any ideas?
Have had to lay off the physio for the last week as I overdid things in the garden when my daughter was here over Easter to help out - think I upset the broken ribs again. Seeing the surgeon for routine checkup 1st may. All things considered life is great!
Cheers Ben and Sharon

FormerMember over 15 years ago

Hi Rumbler

Thanks for your kind words - I feel, however that my positive attitude has suffered a slight wobble this last week, under the onslaught of complete abscence of appetite, combined with nausea and the dreaded diarrhoea. I used to be someone who could (and did!) eat at the drop of a hat - I've got the plus size clothes to prove it . Now its a struggle to get anyhting down - I have even lost my taste for a glass of white wine (most upsetting, and if truth be told, the root cause of my attack of the miseries!)
You're definitely right when you mention how you wonder what you are doing is 'normal'. I think you do feel a bit cast out, even though the support mechanisms are still there. Like you, though, I am very impatient and just want to get back to normal, and the fact that my body won't let me, is SO frustrating. Thats the best thing about this site - you know that there will be people who will understand exactly what you mean.

Anyway, I fully expect my next post to be considerable more cheerful - it had better be, or I'll lose all my new friends!

Hi Crystal (((( )))))

Love Netty

FormerMember over 15 years ago

Hi everybody,
Thank you for all the kind words,im in the ward today so i will post when i have the chance ...Woody

crystalclear over 15 years ago

Hi Netty
You won’t lose your new friends here that’s for sure. I think you are doing great, but you have my sympathy because I know how it is when you lose the taste for that glass of wine. Even more upsetting is that mine never came back! The good part is that you can buy new clothes soon Lol. I know it’s a struggle right now Netty, hang in there, everything is going just as it should from what you say. I’ll write soon. Xx

Hi Ben
I’m really sorry that you’re struggling with the weight issue and occasional dumping. Are you eating plenty of proteins that contain iron, as that is advisable. Also, vitamin D which is found in margarine and oily fish and of course, sunshine. Then also calcium in milk, cheese and bread. Try to avoid sweet things such as chocolate, as this can cause dumping. Having said all this though, I still have dumping, and only nuts and ceriel bars don’t seem to give me a problem. The following link is from Cancer Research UK on diet,

http://www.cancerhelp.org.uk/help/default.asp?page=3926

and this link is from The University of Pittsburg Medical Center for a Dumping Syndrome Diet:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

Having looked at the above, it’s just common sense really, and I can see at a glance that I eat too many sweet things! This might be it, watch this space.
You be careful of those tender ribs Ben, and take it easy.Xx

Hi Woody. As soon as I woke up today you have been in my thoughts. I’m thinking of you there, stay strong, and write soon. A great big hug((((Woody)))), you will be fine and complaining about wanting to go climbing mountains soon and doing action man kind of stuff. See you later. Post when you can. Xx

Everyone else looking in. Hope your day is a good one.
Love Crystal xx

FormerMember over 15 years ago

Hello to the Oesophagectomy bunch !

I remember when I was diagnosed and my GP was informed that I had been accepted for surgery she said "I must warn you, it is a huge operation and my advice is don't buy any new clothes !" My heart ran cold and I felt sick, I though tit was a cruel way to say I hadn't got much af a chance or surviving ! She went on to say "you will lose a lot of weight and the surgical team are worried that because of the amount of stomach they have to resection, you will not be able to sustain a satisfactory body weight even with supplements".

Now 42 months on I'm still 18 stone !

When I went for a checkup they brought a load of students in and the Consultant said "Can anyone tell me what we did to Mr Prynn ?". After a few wrong guesses, he said "well he had a Oesophagectomy, the Ivor Lewis procedure". He asked if there were any questions and one cheeky git said "How heavy were you BEFORE the operation ?"........(no bedside manner ...lol)

I am wondering if I ever had my op !!! I've got the scars, the stinging and tingling sensations but most of all an appetite ! I haven't lost an ounce since my op, in fact I've put weight on !

I was very lucky as my tumour was diagnosed very early and I never had any problems with appetite or eating my food but I have noticed that I do have some very, very slight issues now and again, particularly if I eat too much or too quickly, or don't chew it well. I haven't found any food in particular that affects my dumping syndrome although milk is not a good late night option even in a bedtime drink. Apparently it slows down the digestion and I get reflux in the early hours if I do have a milky drink before bed.

I wonder if some of the effects are psychological ? If you did have trouble pre op then I could understand you being a bit wary post op. When I was in hospital they brought me all the mushy stuff when I was given the go-ahead for solids but when I got out of the HDU I told them that I wanted 'proper' food. I was ravenous ! The only thing that stopped me eating was that I couldn't raise my arms or use my hands well enough so had to rely on a passing nurse to help me. When I got home the first thing I had was a full English breakfast ! The only difference between pre and post op days is now I eat pasta. I hated it before but now I find it 'ok'

Dumping I find worse if I eat big meals quickly, like a takeaway - always too much in them portions and I hate to waste food, and Sunday dinners as I tend to finish off any meat and veg left over, I just pile it on my plate.

If you were fond of food before, then I can undrstand that it would be demoralising but just to let you know there is hope that things will get back to normal.

Good luck to you all
Mick
xxxx

FormerMember over 15 years ago

Just reading back and it seems that people are eating 'high calorie' food to gain weight. The problem there is that it seems to be all sugars, ok for a quick hit but no good for you in nutritional value.

Go for starches and protein, red meat, eggs and cheese. The starches convert to sugar slowly for energy and surplus is stored as fat. Proteins in meat and fish are the key as well as exercise to build body mass - muscle is heavier than fat. You should be looking for body size rather than weight.

Eating fat will not cause you to put on weight. Although your body needs fat, it extracts it from the meat etc that you eat and discards the rest. The worst that can happen with eating fats, is that it gets into the bloodstream and blocks veins and arteries.

Forget those 'Nutrition' Guru's on TV, they are a sham, they are not qualified and it is not a 'protected' profession. Most of their advice is wrong biologically and medically and is dangerous.

God luck
Mick

FormerMember over 15 years ago

First of all Hi to Woody,
hats off to you for being back with us so soon!! amazing keep it up, we're all with you.

And to Crystal,
Thanks for all the feedback and links - great help. I had to see my GP today as I have had a cold which needed antibiotics and left me with a persistent cough so now on steroids to sort this out. I spoke him about my lack of energy (he has treated 2 other ivor lewis patients) and he took a blood test for B12 level and then gave me a B12 jab. I had remembered your post where you said you have regular B12 shots and was going to raise this with him but he beat me to it. Another jab to follow next week. So here's hoping. Thanks again.

Hi Netty,
As Crystal said there is no way your positive response will lose your friends here! We have all been there and know how testing and frustrating the new plumbing fixtures can be.Funny you should say that about the wine tasting - I love a glass of red but the three times I have tried it in the past 3 months it all seemed to be öff" or something so will wait a bit longer until the vintners have sorted out the problem with their blenders. Beer though, isn't quite so bad but only lager so far. I didn't try either until 2mths after the op so you're doing well.

Hi Mick,
Thanks for all that help. Man am I envious of you! I was 72kg before and after the op and lost 6kg very rapidly and over the last 3mths have lost another 4 now 62kg. I can (and do) eat pretty much any thing but it makes a pretty quick exit which I think is the main problem.
I'm pretty active and am beginning to wonder if I'm simply burning off what little I do put on. I also fall asleep at the drop of a hat.
Anyway your comments have been most helpful.

All the best to all
Cheers Ben.

crystalclear over 15 years ago

Hi Mick
It’s good to see you J Rofl at your first paragraph when your GP told you not to buy any new clothes before surgery, and you thought what a cruel way to tell you that you wouldn’t survive it! Lol I really enjoyed that, excuse me whilst I dry my tears of laughter. I’ve got a giggle fit now!

Right, I’ve stopped laughing. I agree with you in that high calorie foods generally break down into sugars and are therefore a quick fix and could contribute to dumping and be a cause of weight loss. For weight gain obviously proteins are an excellent source. Like you Mick, after leaving the HDU I rebelled at having the feed tube and so it was removed and I was able to eat toast. It was only when I returned home that the eating problems began, initially because of the nasty side effects. xx

Ben, you raised a good point in that you eat heartily, but are so active that this might cause you to lose the little weight gained. It is a bit of a balancing act at first, and in your case Ben, if food is passing through quite quickly, this will be a bit detrimental to gaining weight, but in the longer term, once that phase has passed, you will find that you do put on weigh as the body is better able to absorb the calories. It took me around 12 months to maintain weight without it fluctuating. I’m sorry to hear that your energy took a nose-dive and you too are now on vitamin B12 jabs. After the first course of injections, 6 I think, you will then only have them every 12 weeks. And very soon, you will be like Mick – a Duracell bunny Lol. I’m more like the spinning ballerina on a music box ;) xx

Netty, I hope Mick’s comment hasn’t caused you to laugh as hard as I did, as it would cause you a bit of pain I think. Keep strong-minded, one tiny step is a big leap for today. xx

Woody, you’re in my thoughts today. xx

To all looking in, a bright and sunny day for you all.
Crystal xx

FormerMember over 15 years ago

Good morning all,

Just a comment on 'calories'. They are not important in the nutritional sense as it is a measure of how much energy the food contains. This is only a factor if you are measuring 'input - output' levels as excess calories are bad because the surplus is stored as fat for the body to use in lean times. The benefit of pure sugars is for quick replacement for diabetics who's sugar level has gone low, for people in shock where an adrenalin rush has depleted the stored sugars in the liver and for sports people to maintain energy during exercise.

Slow formed sugars from carbohydrates like bread and rice etc are better in the sense that they are slow converting to sugars and have a longer lasting effect from a appetite perspective whereas sweets are short term. They still cause the formation of fat if the energy is not used up.

Proteins are the building blocks and is the stuff you need to build and maintain muscle so very important in weight control. The more you exercise the more weight you MIGHT put on as you will lose (relatively) 'light' fat and gain (relatively) heavy muscle. Exercise is good as it helps digestion among other things and heart and lungs.

Roughage is important but with us we need to make sure we don't overdo it. The food we eat goes into the stomach (or what is left of it) where it is broken down and prepared for digestion. Food is not digested in the stomach.

Some cell walls in vegetables are difficult to break down so act as a scourer as they pass through the system - sounds painful but it is good !

It is only when food is passed into the intestine that it is digested and fats/proteins etc go to work. Because of the reduced size of our stomachs the effects of this 'breakdown' process can be reduced and when this 'part prepared' food passes very quickly into the intestine, the body shoots in loads of insulin to cope with it. This is the cause of the sweats, shakes and dizzyness of dumping. The sheer amount of 'semi prepared' food arriving in the intestine is evacuated by the system as it attempts to cope hence the trotts.

Anyway, the bottom line is, proteins and exercise for weight gain, carbs for energy (long lasting - excess stored as fat) sugars for energy (quick hit) Veg for roughage (controlled) and dairy products for calcium. Most foods contain essential vitamins and minerals as well.

Just a reminder about Milk and we are prone to developing a lactose intollerance that will keep us 'regular' (if you call every 10 mins 'regular' lol !) so you may want to get that checked out with the quack.

So don't dwell on the calories despite what 99% of the weight control expensive faddy diets tell us. Diaticians are better but they are stuck in the 'marketing board' model of appeasing the livestock farmers, grain producers, fishmongers, dairymen etc than health.

muscle = good fat = bad

So diet and exercise can increase your weight ! phew....took some time to get there LOL !

Just a quick note: If you look on T'internet about diet studies you will find that the high protein diets prove the most effective, healthiest and successful than calorie counting ones as they tend to change lifestyles rather than allowing 'indulgence snacks' ( What the hell is that all about ?).

I went on a high protein diet (it was back in 1976 and was the original Weightwatchers one) and I lost 2 sone in 3 months. More recently I went on the Atkins diet (Which is VERY similar to the original weightwatches) and lost 2 stone in two months and had no side effects whatsoever. Now I have (hopefully) got past the worst of the post op issues I will need to lose at least 5 stone so will be going back on the Atkins diet soon.

Anyway, enough Biology 101 !!!

Enjoy this "bright, bright, bright sunshining day ........"

\:0).........................

FormerMember over 15 years ago

Mick, hope you are doing well. I have finally gotten around to checking back on here to see who is still posting from the time I originally came on in November 07.

I found your post helpful. It is now just over 1 year since my total gastrectomy operation (my cancer was actually gastric cancer but it was right at the join and when initially diagnosed they thought it was oesophageal). I am still not putting much weight on, or when I do, it quickly comes back off again if I get a bug or something. I was originally 80kg before I fell ill and now I'm about 67-68kg. Maybe this is my "fighting weight" now as they say - so I'm becoming more relaxed - it doesn't really matter that much so long as it stays more or less level. I'll take your advice above and focus more on protein rather than trying to stuff as many calories as possible into my face each day.

To everyone else posting here - I wish you and your loved ones all the best during these difficult times.

Richard

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