Hi I am having the same procedure on Wednesday I have found it doesn't matter what anybody says the fear is constantly with you ,I am the same ,I don't switch off at night neither.I think my fear is to find out what stage i am at.Hope you find something to help you .

Its all constant fear. I know its not happening to me, but my son, but its constant fear as to what theyre going to say. My son will be told the stage soon as well but hasn't got appointment through yet. Keep googling what I know so far about his tumour size and no spread etc to try and predict - it's driving me mad!

Worry will do that. When my son was diagnosed I lost about 10lbs over a couple of weeks 

The results unfortunately confirmed the tumour is malignant.
However on a positive note, the CT didn't show any obvious spread of the tumour.

Next step is a PET scan in the city hospital possibly followed by Lap staging to get much more detail on the tumour and look for any signs of cancer spread.
Then they look at treatment needed.

We are taking this news as positive as the CT didn't show anything else.

I’m feeling happier at this point.

That is very good news that theres no spread. I remember the absolute relief at hearing that news myself for my son.

Thanks Karren, my imagination had been running wild, so the scan has given me something to grab hold of. 

The mind is good at filling in the gaps and making up its own stories.Hopefully, you will have a more peaceful weekend now you have a better idea what you are dealing with. 

Yes at least you know SOMETHING, instead of all the 'what if this' 'what if that' scenarios.

Hello again, 

Im back with positive news. My wife had an endoscopy a month ago because she had been having difficulty swallowing. The biopsy came back as cancer.

We were devastated and in shock for many days.

The next step was a CAT scan. This was followed up with a PET scan a week ago and a Laparoscopy today.  The news was very slow to come through, but gradually got faster. 

The swallowing gradually got much harder. Shes currently on prescription liquids only.

Today we received the full diagnosis immediately after the surgery.
Stage 1 tumour at the oesophageal/stomach junction.  A 3cm tumour. 

The plan is curative. Four lots of chemotherapy two weeks apart followed by the operation to remove the tumour.

We are all very relieved, as from what we had researched, we expected much worse based on her swallowing.

So today the next part of the journey begins.

I wanted to share this on here to hopefully give others hope in the early stages of diagnosis.

My wife is 49 and has never smoked or had much alcohol. Her BMI was spot on. 

I will post more updates as we progress.. x

Hi Rednax that’s good news. 
I’m  assuming you’ll get another 4x2 week session of chemo post op too. 
I was 10.5 months from diagnosis to finishing treatment which was mid August. Now currently sat enjoying the sunshine in Crete 

it is a long process and yes it’s tough but the sunshine awaits you both if you need something to focus on xx

Great news!

Thank you  enjoy your holiday 

Thank you  enjoy your holiday 

Hi. All of this process seems to take ages when you look forward. But looking back over the last 10 months to now and having my last treatment 3 weeks ago it has gone by very quickly. It is a nasty ride but try to enjoy the good bits when they come. Good to hear your good news

Hello all, an update on my wife. Over the past weeks swallowing got harder and harder. First was the soup & custard. Then the prescription drinks, then water. 
It kind of crept up on us. On Wednesday she started to show signs of dehydration so we went to A&E. 
She was admitted and immediately put on a drip. Yesterday evening after she stabilised they put a feeding tube in her nose.

It’s taken all day to get that working as they had trouble with it being blocked or nipped.

All is well as of now and I left her with the food going in. 

So, she did her best to get as far as she could before treatment starts, but the tumour was just gradually blocking the way.

Oncology meeting on Tuesday. I suspect they may keep her in until then. After that we should have a full picture of the chemotherapy plan. 

the hospital have been amazing!

Glad to hear your wife is getting the nutrition she needs now. My sons tumour almost blocked his oesophagus but luckily he somehow managed to eat up to the chemo and then it shrank anyway. Hopefully your wife will get chemo soon & be able to eat again.

Hi Karen just thought I would let you know that I got the all clear and currently after a CT scan I am cancer free. Unfortunately eating is a chore now which I hate and I have lost over 4 1/2 stone. However I have stopped looking at all esophageal cancer groups on social media and decided to just eat smaller portions but food that I can stand rather than constantly looking for high protein and calories. Being ruled by food can quite frankly drive you bonkers. Also everyone says how amazing the all clear is however for most of us it’s just the start of a very long journey. I hope all is well with your son and you are finding your own way through this process. xx

That's just fantastic Marc! When you think back to last winter when you first posted on here and now being all clear. Did you vocal chords recover? I recall you saying your voice was a bit different after the op. Did you manage all 4 post op chemo sessions? Deans having his 2nd post op chemo soon. He's doing alright thanks, same as you regarding eating, its a chore for him.

He's got bad dumping syndrome at times and the surgical join has felt tight at times but ok again now - I think its due to the healing process. He's lost about 4 stone since diagnosis but luckily he was overweight and is still around 16 stone whish is ok. He gets low quite often (as I'm sure is the case for everyone in this situation) as he says he's had enough of living and breathing 'cancer' & talking about it all.

I think I do his head in trying to advise him about being active & what to try eating, and I buy him supplements etc!

So eating is not good? I know you know this but it supposedly gets better as your body adapts - hoping that will be the case for you.

I don't blame you coming off the groups on social media - you need your actual life back at some point don't you & it can take over. I look at them every day, just for hope & the positive stories of all the people who had the op 10, 15,  20 odd years ago really. 

Well, I think I spotted you on FB as may have been in the same FB group!

You take good care of yourself Marc.x

Hi my voice is still rather croaky and I’m due to have tephlon injected into my vocal cords. This should ease them and literally stop them from sticking. My tube is being widened next month so I can swallow a bit better and then they can leave me alone

Thats good then, they can do something about it. Dean may need a stretch at some point as some foods he can't swallow comfortably so he's avoiding them. Roll on the day they leave you alone!

Hi, it’s Alex. Just an update on my wife. Since hospital she has been relying on a nasogastric tube for all hydration, nutrition and medication as she can’t swallow anything.

initially she was having to bring up phlegm overnight etc which was quite dramatic and stressful.

two sessions into chemotherapy (FLOT) the coughing up of phlegm has stopped which suggests the tumour had shrunk enough to let the phlegm pass. 

She is still spitting out all saliva though as is afraid to try and swallow. She says it feels uncomfortable to try. 

She has two more sessions and then a scan to look at surgery. The surgeon hasn’t been able look into her stomach due to the blockage. The tumour is at the junction.

Do any in the group here have any advice about swallowing with a nasogastric tube?

Should I be encouraging her to try swallowing her saliva?

Hi. Its great that the chemo is working and your wife is improving. My son was constantly having to spit phlegm out - he never had  atube somehow even though the tumour was almost totally blocking.

I'm sure your wife will notice loads more improvement after the 3rd and then 4th session.

I know that the muscles in the oesophagus need to be used or can become weak - like any muscle. There are people who eat AND have a nasogastric tube so it must be safe to swallow your own saliva. I did research it and it said on NHS websites its ok to do that. Maybe your wife has become so anxious about it - and who can blame her! I would encourage her to swallow even when nothing is there at first to get her confidence up. I remember after my sons oesophagectomy they got him taking sips of water 2 days after the op as they said they didn;t want his muscles becoming weak. Hope this helps. 

Thanks for your reply. I’m trying to push her a little to try, but it’s hard to see her so anxious and scared. We have a meeting with the surgeon next week so hopefully he will offer her some reassurance