Hi 

I got diagnosed 3 months ago I have Barrett's and a camera every 3 years in England biopsy came back cell change went for cat scan came back clear then pet scan showed early cancer lymph nodes showed activity went for a Ebus came back clear

Went to see the surgeon on Wednesday and I'm going to get my osophagus removed and part of my stomach would appreciate any one's experience of this operation and life after it 

I feel lucky it was caught early when I've been reading some peoples experience's on here 

Good luck and love to everyone 

Hello [@Milly58]‍ and [@Hilts]‍ can I please join this group. 
just found out my husband has some form of stomach cancer, I've been reading all the posts and got to page 61, then got the devastating news so I would like to join please.

Martin had his kidney out 4 years ago and has been having yearly CT scans, this year 2 things showed up Non Hodgkin Lymphoma and this upper GI cancer, I don't even know the name.

we went to see a consultant yesterday but Lymphmoa and upper GI hadn't talked and upper GI didn't know about Lymphoma also no CNS in the room. I did phone her up when we got home and she was going to sort it out. So just had a phone call with her, tonight we'll have a pre med phone call Monday a face to face with a surgeon and hopefully a laparoscopy on Tue, Lymophoma I think said the could wait as he was going to have radiotherapy for that. 
I was told surgeon will ask (if alls well) if he wants the surgery or not. If he doesn't have it what happens.

Hes 79 and eating fine no problems at all and fairly fit for his age.

I just need a bit of help, I feel so sick with worry, I have the travel bands on my wrist a travel tablet and ginger tea. Martins just sat there wondering why I'm like this. I was just the same when he had is kidney out.

Well I think that's about all I do hope someone can enlighten me a litbit before Monday.

Thanks and hope you're all doing fine xx

Hey y'all, 

welocme to our 2 newbies Andy 84 and sueCC. Welcome to our self appointed oesophageal cancer club- one , without a doubt you'd rather not be in.

But all of us on here we're newbies once- so trust me when I say we know EXACTLY how you feel. X

First I'll answer you Andy 84. Sounds like you were caught nice and early. Oesophagectomy is a very big job- BUT, from my experience the hospital teams etc know what they are up to and are good at what they do- read mine, Millie and Andy 47 posts to get some insight. No fun, BUt hey here we still are. My husband is now 2 years post op and some things have changed - like the amount he can eat, but that doesn't stop him stuffing his guts (what's left of em) and we , Millie and Andy 47 have been on some cracking holidays. As I said to our surgeon " I am glad you saved my husband , so I can kill him myself" (:

SUECC- you never have to ask to join- it is a public board. I invented the 'club' as I think I am funny! So post away. Of course you are sick with worry- it would be a bit weird if you weren't.

The whole initial stuff for us passed in a blur.

Ye, the lymphoma will be secondary to the oesophageal, BUT they will be nuking that, so the lymphoma will suffer too (:. Surgery is only done if the person is fit enough to have it- a totally right call in my view as oesophagectomy is not an op without risks, so you have to be super fit. If they don't operate what happens? - usually chemo and radio, possibly immunotherapy etc. it become 'palliative' before you pass out that DOES NOT mean check out time- it means treatment of a chronic condition- so they hammer the symptoms when they play up- there are a few on here and one guy 13 years into his palliative, and another who WAS palliative, but is now disease free!! 
ASK away , but it will all come together fairly rapidly.

Andy 47- glad you've been done, never straightforward in this game for any of us !LoL- hope it has worked.

Mine - wellas encoregable   as ever! All quite too. His cough has completely gone!! He might finally be getting the message that he cannot eat a man sized meal all at once! See how long that last eh

As ever y'all take care

Hilts

Hi Hilts - lovely informative reply as usual xx. Welcome (unfortunately) to Andy 84 and SueCC - can only say that the site really helped me - I am a widow and alone (have wonderful kids) so Hilts, Milly etc have been a huge help in my darkest hours - you realise others are going through/have been through the same - and to keep a sense of humour. I recently had major surgery for a hernia which was caused by oesophageal surgery - which was squashing my lungs. It was done by robot and when I went into theatre I had THEM in stitches - I said I was disappointed that a little Dalek like robot wasn't there to look after me. Was the first such op he'd done by robot - and a huge success. The NHS are WONDERFUL- welcome 

Andi xxx

Thank you that's very helpful, the palliative is a bit upsetting though even though you may live with it a good few years.

So today the CNS phoned me up, she's put things in order and said Lymophom guy will most likely let the GI guy go first. We have an appointment with the surgeon on Monday for hopefully the Laparscopy on Tuesday, As we live 3/4 hr away from the hospital we received a phone call today to go to our local hospital for bloods and things so a hands on pre mad then got home and a phone call for the other stuff.from hospital. If he has surgery I'll be at Notts.

The CNS said the surgeon will ask if he wants the oparation! so I take it if he doesn't have it it'll be chemo and palatine care. He's 79 and no or problems with eating at the minute, I take it that would change if he doesn't have the oparation. Is the palliative chemo an easy one or is no chemo easy.

Thanks so much for the info you've been very helpful Xx x

Hi, SueCC, 

I think I can safely say that chemo is no fun - no matter how it is sold.

However, all of the club have made it through to compare the delights.BUT, it is good at what it does- ie killing rogue cells. Chemo is order of the day whether you have surgery or not.

For the No- op option I think I  can't be sure- it is 8 cycles of whatever they use

for the op it is 4xFLOT ( the chemo drugs) surgery then 4 more FLOT cycles.

If he is having no trouble swallowing that is good- most of us on here that was the first symptom.

it is likely that he will have masses of scan, tests and scopes over the next couple of weeks and it is an absolutely roller coaster- but one many of us have ridden and gotten off the other side.

so keep us up to speed on your trials and tribulations (:

Hilts

Thanks hilts, he's had PET scan CT scan as that's where it was picked up, he had kidney cancer 4 years ago so has yearly scans and luckily it was seen on there, or else he would have been walking round with it none the wiser.

After reading your posts hilts Mablethorpe, Sutton on See, we live about 10 miles from them.

Im finding this group so helpful, thank you xx

Awww- I loved Maplethorpe and Sutton on Sea- unspoilt, 'unreconstructed' British at its best. Millie is also a Sutton  fan. I really really liked Louth as well what a breath of fresh air that place was- small business' 'old fashioned' proper town. Lincoln next I think for a 'pop up' weekend trip (:

We went to Maplethorpe etc about 8 weeks after husband finished his post op chemo- he even went in for a 'dip' brrrrr.

You said it was picked up on PET, so that suggests it's small as it is not giving any symptoms?
so might not even need the 'big' op, I've 'heard' - might not be correct, that small ones can be blasted off , using an endoscopy type 'thingy'. So, certainly one to ask the surgeons. I think it will be very important to ask what ALL the options are and in his ( the surgeons) experience what to go for. Have you been given the 'staging' yet?

They we're quite clear with us from the start- we did ask for a straight answer- They told us they would go for curative intent, BUT no guarantees. He is at this time'  'visible disease free' , they never say cured, just clear for now . Fingers x it stays that way!
keep asking away

Hilts

Hi Hilts and all and welcome to Sue and Andy,

Our current situation is causing us both anxiety so we are keeping everything crossed that the Colonoscopy on Tuesday doesn't show anything sinister and goes according to plan. We are both also anxious about the whole process as like everyone else Kev has to take the medication to clear his bowels but not everyone has his new plumbing and we are hoping he can cope with no food and the effects of clearing his bowels. Also I'm worried about the procedure as again his digestive system has been reduced and moved upwards. Has anyone on here had a colonoscopy after an Oesophagectomy? The good thing is we contacted his surgeon who said he could have it done. We know we have to trust the experts and just 'get it done' but naturally we are worried. We have managed to keep ourselves busy during the month long wait. In fact Hilts and Sue we went to Lincoln yesterday to the Christmas Market which was lovely.

Anyway as I said welcome to the forum Sue and Andy. As you will have seen everyone's case is unique and whilst we or our other halves  have had the same op in reality they are all slightly different and we've all had different journeys/complications and on going issues.If you've read the posts you will know what I mean. We had a longer wait than most between diagnosis and the start of treatment 14 long weeks during COVID restrictions too. However as Hilts said a few of us have managed to get away on holidays and do normal things. In fact we are due to go on a Caribbean cruise in January.  I've been amazed at the progress my husband has made and he is still taking part in the active recovery with the NHS - in fact that's who organised the trip to Lincoln. If it wasn't for the positive FIT test which is part of the National screening (which is a good) we'd be doing very nicely. This has thrown us off course and unnerved us both. 

Andi you sound brighter so I'm hoping that you are making progress and feeling a bit better. 
Hilts so pleased to hear that your husband isn't coughing! 

I think Hilts and Andi have answered the questions but please feel free to ask anything. I may not answer straight away as I'm stressed myself at the moment. 
 

keeping the faith for everyone 

Milly