Oesophageal Patients Association
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Staging

Hi can some one help me please ... My mum is due to have this operation tomorrow we are all so scared after talking to the surgeon and him telling you what complications can happen ect.. But what he did say is that he won't know that staging until the Tumor is cut out even tho she had the staging before she started the chemo can some one explain please ???

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Hi Calboy

As you said the staging is done preoperatively. However it isn’t allows correct so only when they operate can they be sure.

They have to tell you all the complications (my briefing took over an hour) but I only had 1. Many people have none so let’s be positive and hope for the best.

Of course you’re scared but I am sure your surgeon has lots of experience. The best is to be there for your Mum as the post surgery recovery is very very hard.

All the best

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Thank you for your reply .... She really did well on the chemo and sailed it... So hoping she does well for the surgery tomorrow... After all the tests they done they said stage 2 so I'm hoping there not too wrong when it's all cut out.

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I was stage 2, had chemo then op that was 4 and a half years ago. I had no complications but they have to warn you of them. Be strong you can do it. Take one day at a time. Hope all goes well x

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Thank you .... means a lot she just wants it done and out the way thank u and I'm glad ur all ok now ...

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Which hospital is your Mother in?

Did the surgeon mention "Ivor Lewis" ? This is the most common procedure and is named after the surgeon who invented it.

I had mine 26 years ago and am still fighting fit.

I expect you will have lots of questions later on after the op........that's what we are here for.

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She will be in Broomfield hospital we are all very anxious but she is a fighter X

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Hi !! My hubby was and still is at Broomfield under an amazing team ! Alex the surgeon and 3 wonderful nurse specialists .. especially Karen ! She’s in the best hands ... keep positive!!.good luck x

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How is your hubby doing

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It isn’t until after they do laparoscopy (staging) that they can really be sure through biopsy the degree of cancer. Tony was T3 N0 M0 but it was found in the nerve endings also.

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We were told right from the get go that he would have pre op AND post op CHEMO same 9 weeks. I can’t stress enough the importance of listening to them and doing just that !!! It’s like an insurance!!

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Yes Karen is lovely ... My mums surgeon is mr tang ... My mum is due to go in tommrow x

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Ha ha .. Tony was supposed to have Mr Tang but he had personal problems right at last minute ( threw me into a panic) but Alex is equally as amazing! Since seen Mr Tang in follow up! I won’t lie , it’s a bloody nightmare , I thought once surgery was over that things would gradually improve as he amazingly was home after 6 days ! No NG tube started soft diet fairly quick, but you just cannot be prepared for the side affects of the surgery and the surgeon can only tell you so much as not everyone is the same .Unfortunately Tony has had a lot of troubles with the ‘strictures ‘ whereby the new join in Oesophagus narrows due to scar tissue so this Friday we are back again to Broomfield for his 7th “ stretch” ..( put a balloon down to widen .. done by surgeon ) .. in as many months as it is causing food to get stuck juslike before! It is getting better though and the gaps Between it happening are widening and he’s got so used to that he no longer is admitted or has any Anaesthetic!. I don’t know how he’s got through it. Also there is the ‘dumpi ‘ syndrome, again not all suffer but it is due to the new ‘plumbing’ patients get insulin spikes but like being a Diabetic from now on. Please don’t panic though , there was a time that I thought our lives were completely over and things would never be the same. Whilst that is to some extent true , you do however suddenly find that you have adjusted and will and that you get used to the new ‘normal ‘!!If you don’t it will drag you down . You do smile again trust me ! And although there are ‘blips’ and days when you feel heartbroken for them and angry that this has happened, that’s when I take a deep breath and think ‘this could be so much worse so get on with life !!!’

All the best to Mum and your family , keep strong together!she will get there ... just takes a good long while ,we’re still only 8 months and learning !!xx

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That' has really helped me thank you ... Mum doesn't want me at the hospital tomorrow because I'm a worrier... So I will have to just keep myself busy for the day ... But I can't tell u enough ur message has really helped thank you x

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Aw I’m so pleased ...it’s natural to worry about someone you love. Try not to over do the worrying and make yourself ill , I did end up having a few weeks off work with stress , but got to the point where I needed to relax ! Anything you need to ask you can always private message me or there is an abundance of knowledge and support on here that without it I don’t think we would have coped !!( apart from the odd G& T 😘)Good luck and let me know how it goes ..I’ll keep everything crossed 🤞

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You are the first person from the Chelmsford area on this group I think so has helped me ... How did u find going to see your hubby after the op while he was in intensive care I'm dreading it X

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I was a nervous wreck! Be prepared for wires coming out of everywhere! Take deep breaths it is a shock and scary as they are surrounded by machinery but rest assured that they have 2-1 care and a nurse literally sits directly in front on a computer controlling everything ALL the time. I just felt so sorry for him that he’d been put through such trauma and had no control over it. In actual fact he was completely pain free and although faintly was able to speak to me which helped a great deal ! I was amazed at how quickly he was started on a diet ! In a couple of days he was moved to HDU then two days after a general ward then home ! That was really scary ! One step at a time, keep me posted I’m thinking of you cos we know EXACTLY where and what rooms you’ll be waiting in !! I’ve got very accustomed to my way round that hospital and the coffee shops ! 😉

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Also how old is your hubby if u don't mind saying my mum is 62 apparently this is long for the operation

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Meant that is young they reckon for the op

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Absolutely!!

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He had just turned 63 ! And was fitter than he’d ever been! We run regularly ( the night before the op I had to tell him to get off our roof of our house which we had just started renovating literally a month before diagnosis!so that I could give him his Clexane injection in his tummy ) and the weekend before ran 16k !I must admit the fitter you are for this op the better but ALL ages endure and survive so don’t fret. It is one hell of a long op ...9 hours he was on the table .I was loading a skip at the time patiently waiting for Alex who promised faithfully he’d call once Tony was out of theatre, and true to word late in evening he did ! and I just burst into tears ! God knows what our new neighbours thought !!Your mum really isn’t old (I know she must seem it to you lol ) I’m 57 ...actually twenty years younger in my head ! With 3 kids in their early 30’s and 4 grandchildren. She’ll be ok , just try not to worry too much , easier said than done but this IS one hell of a roller coaster and you need to try and keep positive thinking !xx

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Awww thank you means a lot. I will keep u posted X

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im 61 and hope to get operation next month,, was to be this month, but still checking my heart,,,

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Awww hope your heart checks come back ok I bet this page helps u a lot X

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Hi Calboy.

Of course you are all scared! It's a big operation and the surgical team have to tell you about anything that could happen - this is the law and they must do this before your mum signs the consent form.

As previous replies have stated, staging is done beforehand (my husband was stage 3) but obviously, once the operation is taking place the clearer picture can be seen. In my husband's case, there was more lymph node involvement than thought but they just removed more.

It is a big operation and there can be complications, but only some people have a few and some have none. My husband had one (a small leak around the join) and had to have a temporary stent fitted. His operation was at the end of February and he's now on his second round of chemo sessions. Post operation involves changes in diet due to the alteration in the internal plumbing but (I can't stress this enough!) everyone is different - reacts differently and copes differently. My husband is not doing too badly , although this second lot of chemo is hitting him harder than the first (but that was to be expected). He's lost some weight but not masses.

Of course you are all worried ( I was scared stiff) but you will be given lots of nutrition advice etc etc afterwards - as well as lots of post op support. Just try and stay strong for your mum and let her make her own decisions about what she can or can't eat. I'm only saying this as I tried to "nag" my husband and found the best thing was to let him find things out for himself.

I'm sure you'll get a lot of responses from people who are now doing really well years afterwards and - with a few adaptations - leading active, healthy lives.

Wishing you and your family all the best. Kate

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Thank you this really helps me mum is in there now ... I know she be fine she is a hard cookie X

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Thinking of you. The waiting is awful but I'm sure you'll be another one reassuring others on this site in months to come. I never thought I'd be ..... but here I am doing just that! X

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Thank you Kate .... I'm glad everything is looking up for your husband .... X

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I had my surgery at queens hospital and mr Tang was my oncologist he is lovely, I'm 8 years post op good luck xx

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Thank u yes I have heard good things about him X

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Hi Calboy,

I went through the IL procedure 3 years ago and came through it well. I'm sure other folk will respond as well - I think you will find that all respondents will have reasonably similar stories.

It's hard not to be worried - my friends and family were - I was terrified but putting on a brave face for my friends and family.

I went into my procedure having been staged T1bN0M0 - I had a similar question of my surgeon. The response he gave me was that

1) a Oesophageal tumour tends to be in a pretty tough place to inspect

2) shoving a tube down your throat with a camera and a light only shows the inside of the oesophagus

3) he couldn't be confident about staging - particularly of lymph until he got them out for inspection

4) I am going to take a wide margin (the radius of the area around the tumour) he was going to take

After the procedure I was staged (by inspection) T3N0M0 - once the test results came back I was confirmed T3N0M0

My surgeon wanted to feel and see the lymph (he took out 53 lymph nodes) to help him with the margin.

So, your mum's surgeon is probably adopting the same approach.

I hope this helps.

I genuinely hope your mother comes through the procedure well and makes a good recovery.

There are a load of us here who have made good recovery !!!

Good luck

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Thank you for your message this seems to be the only page I have found positive feed back from so this has really helped me X

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My pleasure. Feel free to ask me any questions. Likewise your mum...

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Thank you .... Just want that call to say everything went fine ... I'm not looking forward to seeing her with all them tubes X

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Calboy,

Mate. She'll be alive! Tubes will be scary.... She'll most likely have a catheter, 1 (or 2) lung drains, a gastro/nasal tube hanging from her nose (I hated it), a feeding tube, a central line, and her liquids, pain killers.

They had me up and walking two hours after waking me up. It took four people walking with me to carry the tubes.

I was so high it was hilarious ! Felt no pain...

I am happy to hear she's awake mate.

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I know mate it be fine she had to be there for half 7 this morning so I'm guessing it be getting started about 9 just gonna keep my self busy today best I can

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OHH WOW,,, PHysio mentioned to me would be up next day, to start walking again etc,,, but 2 hrs wooo,,, I am trying to get this into my hubbys head,, re all the tubes etc,,, im sure hes not taking it all in,,, though have told him of all the side affects etc... Im more worried about him, will he cook for himself etc or just eat sandiwches for a few weeks, than the op,, lol

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u seem the same as my mum she is more stressing out about how we all are rather then worrying about her self.... I think I will not go and see my mum tonight she won't be any the wiser anyway I can't handle seeing her with all the tubes in her x

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So you get another staging after the op, is that what you mean?>?? I see the surgeons next week,, they were hoping go my op 22 this month, but after seeing cardiologist yesterday, think it will be JUNE now,,, my risk factor is higher than norm as heart condition,,,, my staging at the mo is T3N2MO,,, I had 2 chemos and it has shrunk now to 2,4 cm,,,

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My mum was also on the chemo for 9 weeks and also they said it had shrunk and done its job ... But they didn't say by how much it had... When they done the camera down the throat not sure of the medical name they said it looked like stage 2 but won't know until it is cut out and looked at properly

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Sorry, can't explain I think you just have to trust your med

Ical team. It is scary and I felt I had been given too much info but these days they have to spell it out. Hope all goes well today. Just take each day at a time. In fact I found some days I could only look an hour or 2 ahead.

Its a huge op so help your Mum to take things in small steps.

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Thinking of you all today.It is a long day for you waiting for the phone call to say she will be in recovery. I had the op over 2 years ago. My family kept busy they were allowed to see me briefly after the op. I was at UCLH London. I was awake and in Critical care hooked up to lots of things. Feeding tube jej in intestines. Tube from nose, catheter , drains, wires. It was very calm and lovely people in critical care seeing to me . I was in a chair the next morning sitting up. I stayed in there for 5 days before being transferred to a normal ward. My family were able to come and go. I was talking but due to medication cant really recollect those 5 days. I had problems with fluids going down so they did a stretch 2 1/2 weeks on. I spent 3 1/2 weeks in hospital. I was seen by physio’s who got me out walking attached to all my equipment and was able to go to the toilet and wash myself after a week. I was stapled up with a large scar going from shoulder blade under arm breast level and another scar on stomach. Mine was a full ivor Lewis op. Scars fading now. Listen to advice and go with the medics. She will know her body.

Yes it is a long road don’t expect eating much when she can go onto purée food. We have a smaller stomach and it takes some getting used to. I don’t have the hunger feeling I eat 6 small meals/snacks a day. Dumping is an issue not being able to eat high sugar/fat. Also drinking with eating is a no no.

Start walking as exercise and gradual build up.

The lymph nodes they take out take about a week 10 days to get results from.

That’s enough info

Good luck

Debbie

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Thank you Debbie that is a lot of good information to take in 👍 X

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Thanks for this info,,, im somebody who likes to know whats coming,, my family keep saying dont look things up etc,, From what i know so far, mine will be a full op,, i presume iVOR lEWIS, THOUGH FIRST TIME IVE HEARD THIS NAME ,, ON THIS SITE,, nobody has mentioned it to me as yet,,,, mmmm read about dumping,, seems maybe have this re sugar/fat,, i need tell hubby about this,, as he will be off work when i get home from the op,,,so you cant eat and drink together?? is that what you mean?

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Hi Yvonne

Don’t stress about “ dumping” he may be one of the lucky ones as not everyone suffers from it and not everyone has trouble with digesting the same foods. Mostly you are right though that drinking and eating together is a big No no ! Tony has learnt over the past months what to eat and not to eat , mainly sugar jams too sweet things but like a diabetic which is a pain when the surgery causes such a weight loss ! But even tthat slowly improves. Dumping causes swears rapid heart rate buses and dreadful diarrhoea then completely washes him out so that he just wants to sleep for hours. It’s not great , even eating just one mouthful too much can bring it on but your hubby will learn how to cope with his plumbing!bit of a mindfeild but you’ll get there believe me. There is light at the end of that tunnel !!

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I too wanted to know EVERYTHING even watching the op on line together ! I was a student nurse and had watched an open Ivor Lewis about 10 years ago and in those days you were in hospital a lot longer than you are now !thank god we’ve come this far and know a whole lot more ..never did I dream that one day the man I love would be going through the same life saving surgery but is out smiling and full time work the other end !!

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Calboy,

Assuming your mother is having an Ivor Lewis, as mine was on 6th Feb this year.

The operation appears complicated, but in my case I walked through to theatre and with 3 deep breaths of an anaesthetic gas, it just seemed that 5 seconds had passed before my operation was complete and I headed to recovery, awake and not in pain. - in fact it was many hours. I felt no pain for at least 2 days and felt good enough that I could have gone home there and then. I was discharged after 8 days to begin the postop recovery. The recovery has its ups and downs but I still believe that the operation itself was perhaps the best part of the whole procedure - received wonderful care and attention while in hospital from medical, surgical and nursing staff. Grateful to have been give this opportunity to fight this condition.

Stay strong and try not to overthink what the operation involves. It will be over before you know it.

Best wishes,

JamesB68

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Thank you James I'm glad u are on the mend mate .... Makes me feel a little bit more at ease after that

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