Surviving Oesophageal Cancer

Hi Annie

I am in the same situation as yourself as my partner had OC and had the Ivor Lewis proceedure last September. Unfortunately I cannot advise as what could be causing the stomach pains as we are new to this ourselves and John has so many different things going on. He tends to have a sensation of his stomach turning over when he has eaten and then is running to the loo every 20 minutes, it seems to be when he has had sweet things or overeaten. His weight is up and down losing a pound 1 week and gaining it back the next. We are to see the oncologist again next month although have been messed around by his team so need some questions answered. Have you asked for an ultrasound scan on his stomach? I would demand some answers and asks for tests if you are concerned it is your right. As i say I am new to this recovery period but am here if you need to talk or want a shoulder. The people here are wonderful and mick (Brumigem) is a grea help. Hope everyone else is doing ok, take care

Love always

Sal

xxxxxx

Hi Annie – I’m sorry to hear that your husband has such pain 5 years post-surgery. I’m 2 years post-op and still suffer from dumping syndrome which sometimes is very painful, but from what you say this seems a little more severe than that. I have heard of some people getting severe pains because the operation site has thickened up extensively with scar tissue and this requires further surgery to ease the scar tissue and stretch the gastric wall. However, obviously I can’t say what the cause is so your husband really needs to consult his GP and request an endoscopy or whatever the doctor feels to be appropriate. I too have to have B12 injections every 12 weeks and this seems to be a common theme after an oesophagectomy. I’m sure there is nothing to worry about after all this time but he should insist on tests to try to resolve the problem. Hope all goes well with you and please let us know how he gets on.

Hi there Sally – sounds like John has dumping syndrome too. Hope all goes well with your appointment next month, let us know how it goes.

Hi Mick – hope all is well with you too. Big hug.

I’m feeling good lately, tiredness gets in the way sometimes but I’m just getting on with things.

Love to you all
Crystal

Hi there

I am new to this site. My husband Nick had his op 27/01/09 to remove the oesophagus and quite a bit of his stomach. We were given a diet sheet to follow which is of no use at all. My problem is that Nick has type 2 diabetes and in sept 08 had a quadruple heart bypass .... add to this the OC and trying to keep his weight loss minimal you can see my dilemma. Have spoken to the dietician at the hospital but they keep saying he meeds to build up but if I follow the diet given he is likely to have a cardiac 'event'. Any ideas on how i can keep the diet low fat and low sugar but help the OC as well. The specialist has told us that he cannot have another chemo session (usual post-op) as the heart probably wouldn't cope and that there is a 50-70% chance of it coming back. We are determined to beat this and give Nick the best quality of life we can. Any help/hints would be appreciated.

Jane

Hi Jane
From what you say it seems a bit of an understatement to say that you and your husband, Nick, have been through a very bad few months. However, I’m sure you’ll find some good help and support within this forum.

I know from my own experience that diet after this major surgery is very difficult. Eating a little and often didn’t suit me at all and in the beginning most food made me feel ill, so I just ate exactly what I wanted when I could or wanted to, which wasn’t much at all. However, I’m not suggesting that Nick does this on account of his diabetes and heart bypass surgery. Over a period of a few months I gradually began to introduce a sensible, healthy diet, which over a period of 12 months enabled me to gain weight slowly but steadily.

You might want to take a look at a Mediterranean style diet which is considered very healthy and suitable for heart and diabetic related problems. This diet is typically high in fruits, vegetable, beans, peas, fish, monounsaturated fats to saturated fat ratio (olive oil), and low in dairy, meat and alcohol. Below is a link as to what the NHS say about this type of diet:
http://www.nhs.uk/news/2008/09September/Pages/Mediterraneandiet.aspx

At first I think you’ll find that Nick gains very little weight because he won’t be able to eat enough, and it will be trial and error on finding the things he can reasonably digest, but over time with this diet he’ll gain weight. As with anything, if in doubt consult your doctor or dietician.

I do hope Nick is making a good recovery. There are several people on this thread who’ve undergone the Ivor Lewis procedure and I’m sure will be able to suggest other ideas or just give you some encouragement.
Let us know how you get on.
Very best wishes
Crystal

Hi there Mick – Hope you're doing great! I see you’re all going to get together which will be lovely for all. I wish I could come but I don’t travel well LOL.

Hi Sal
How are things with you and John and are you managing the Dumping Syndrome better than I can. I really hope so. Most days I'm feeling good though.

Love to All
Crystal xx

Hi Crystal and everyone else reading this

Thanks for the info on the diet I will be looking into that . Nick has also had 'dumping' but I found some details on this from an american hospital where they have been experimenting with laying down (or reclining as they put it) after eating. This allows the food to start digesting in what stomach is left rather than quickly passing through into the small intestine. Seems to have helped yesterday with Nick.

As they colapsed a lung to do the op this needs time to recover, I know, but how long? Nick is sometimes out of breath with very little excertion. When should we expect the lung to be fully inflated (lower part had not done so on release from hospital).

Well keep on smiling folks ... it will stop giving you wrinkles.

Jane xxx

Hi Jane
It seems odd that the hospital would release Nick with a partially inflated lung. As far as I know, my own lung was fully inflated upon leaving hospital, although it certainly didn’t feel like it!! Like Nick, I was very breathless, couldn’t make it upstairs without pausing half way and was in a lot of pain from the broken ribs. However, I continued to practice my breathing exercises at home, although nobody told me to, it just seemed like a good idea, even though it hurt a lot. It took around 3 or 4 months until I could draw a deep breath again, and longer for the ribs to stop aching. Even now though, I still get twinges from the ribs and definitely from the scars.

Thanks for the tip about reclining after eating. That’s something that I do all the time as I don’t have a choice. The dumping symptoms leave me so drained of energy that I have to lie down as soon as I’ve eaten anything. My husband bought me a reclining bed with memory foam mattress when I left hospital, and I don’t think I’d have managed half so well without it. The consultant says that the dumping could stop of its own accord or remain. I’ve tried everything possible so I just work around it now and get everything done before I eat.

I hope Nick is in good spirits and that you’re not making him laugh too hard with those poor ribs of his. I hope too, that as a carer you’re taking time out for yourself because I know how stressful all this had been for you.

As you say, keep smiling. Things do get easier.
Crystal xx

Hi there

Well I had a word with the cancer nurses, assigned from the hospital, about not telling us about dumping syndrome. If it wasn't for this site I would have no idea what to expect and told them they should be warning post-op patients about 'possible' effects of the surgery ... I also told them how good this site was. Nick has had a problem with blood sugar level dropping so I spoke to them about this ... oh yes we often find diabetics on insulin have to change strength of insulin!!! as Nick has been controlling his through diet and Gliclizide then surely the same will apply in that he does not need to take as much Gliclizide. Have spoken to GP and they want us to keep a diary of morning and evening levels and will review medication next week. Why then do I feel that we are not been given the whole outlook from the hospital.
Thanks for letting me have a rant! Have started the meditereanian diet so hopefully Nick will benefit from it ... will keep you posted.

Jane

Hi Jane
I agree with you that something so important as changing strength of medication and the after-effects of surgery such as dumping syndrome should be discussed with the patient. My own team referred to it briefly, and as they explained later, it’s not something that everyone gets so they don’t go into too much detail about it initially. Another common side-effect is acid reflux and this can happen just by bending down briefly or even whilst asleep. This is really nasty as the acid is painfully hot and it actually blisters my mouth when I get it and leaves a really bad taste and painful sore throat. It doesn’t happen often now as I sleep reclining and bend down keeping a straight back. If it does happen, the best remedy is ice cubes and then mints.

It’s good to hear that you like this site and finding it useful. Plus, it’s ok to have a rant whenever you want to as it’s good to let off steam. You’ll probably find some useful mediterranean diet tips and recipes online and this diet is good in that it contains many of the so-called super foods.

How is Nick doing both physically and emotionally? Is he able to keep in good spirits? I know some people, who after this surgery, feel elated and just relieved, as I was, whilst others go into depression. Anyway, it’s quite early days for Nick and so far he seems to be doing well from what you say.
Take care
Love Crystal xx