Hi. The fear is understandable of course. Have you had any treatment yet? My son was diagnosed oesophageal cancer yesterday so we are all still in shock. Hes 42. None of us can think of anything else. I don't know how to just carry on and do normal things. Are you trying to go on as normal?

Hi Karren, Very sorry to hear about your Son. It’s all a bit much to deal with however even after just a month the fact that it’s real and the why me feeling gets more bearable. I know it’s difficult but please get him to try to NOT keep looking it up on the internet as this really is frightening and you nearly always get the worst case scenario on there. I had an endoscopic ultrasound this morning and it was fine. I had a laparoscopy 3 weeks ago and this was abit more uncomfortable and sore for a few days but another thing to tick off the list. Take each day at a time. I am a teacher with young adults with learning difficulties and autism so it was difficult to keep working as they are in your face a bit. It’s early days and I am doing as much as possible at the moment whilst I can before Chemotherapy. So yes as normal as possible. Take the scans and tests they will do one by one and make sure he talks to you and his loved ones about it. Please contact me anytime or get him to as it would be good to have someone else who understands the challenges. 
All the very best

Hi 

just joined here 5  mins ago  

I was diagnosed at the beginning of November so I’m a bit further along than you guys. 
it’s not easy at the beginning. Yes, sleepless nights. Some nights I had to get up and went for a walk and a cry at 3-4 o’clock in the morning  I would come out of a hospital appt and just break down in tears once outside. You try and hide it from your loved ones but they just want to help even if they don’t know what to say. 
Focus on fitness, get as fit as you can was stressed to me. 
There are a lot of hoops to jump through and you may feel “ how many more bloody tests / scans before something is done to help” 

I had my first Chemo last Saturday. First couple of days were ok then I went downhill for a few days but today after just 10 days unbelievably I was able to eat proper food 

2 days ago I was struggling with liquid shakes today I’ve had cheese on toast!! 
Don’t think the dietician will believe me. 

Not sure how this forum works but anyone feel free to message me anytime 

Thank you very much for this message. It really helps to have someone talk about their experience. I will try and get as fit as possible and really hope that the eating gets better as it’s beginning to get me down. Seriously thankyou and keep in touch

How is your eating ? I found the Ames powder shakes the best tasting. Make with milk rather than water as this gives you more calories. The smaller more concentrated bottles are horrible. 
Myself and good meaning g:f  fell out a good few times as she’s trying to get at least 3 a day down me and I was really struggling with all the phlegm / foamy stuff that sits in the way. Trying to explain that it’s like attempting to get fluid passed a sieve that has half the holes blocked up. 
you get some down then bring it back up again so you have to trickle another in. Like one step forward and half a step back 

I’ve started drinking smoothies made at home with vanilla whey protein powder to give me more nutrition. It depends on the day sometimes I can handle potato mashed but other days hardly any thing goes down. I could kill for a Big Mac and I wasn’t even a big fan of them before. Thanks for the tip on the shakes

Hi BoxBrain. Thanks so much for replying. You give very good advice - especially re the internet as it sends you round the twist. I will pass your advice on to my son. Yes the feeling of 'Why my son' is unbearable right now & I know my son feels the same obviously. Looking at the symptoms yourself & Mouser have mentioned are just like my son. He can manage liquid nutrition drinks, a bit of mash with cheese spread & butter. And cheesy wotsits.He did manage peanuts somehow if he chews them up well. He also has that frothy phlegm coming up.

Hi BoxBrain. Thanks so much for replying. You give very good advice - especially re the internet as it sends you round the twist. I will pass your advice on to my son. Yes the feeling of 'Why my son' is unbearable right now & I know my son feels the same obviously. Looking at the symptoms yourself & Mouser have mentioned are just like my son. He can manage liquid nutrition drinks, a bit of mash with cheese spread & butter. And cheesy wotsits.He did manage peanuts somehow if he chews them up well. He also has that frothy phlegm coming up.

Hi Karren

Hope you are well

I know this thread is rather old but i saw your comment about cheesy wotsits and had to reply as they are one of the only things ive been able to keep down in months.

Had my endoscopy today and was diagnosed there and then with lower oesophageal cancer...im still in shock tbh

Hi Kazza. Yes, my son managed wotsits pretty well as they melt in the mouth don't they. He was diagnosed 'there and then' also at his endoscopy and we were in total shock as was not expecting cancer. Did you get sent for urgent endoscopy when you first went to GP about swallowing issues? My son had to keep going back they were useless. I am thinking that you will have a CT scan, then PET scan then Laporoscopy to have a look inside, then they'll start chemo then surgery, then more chemo. My sone was diagnosed 6th Jan 25. had scans quickly then had to wait for laporoscopy till 10th Feb, then chemo started 31st march, surgery 1st August, recovery then more chemo in December. His scan in March was clear.

The time before diagnosis and up till chemo started was horrific as in he couldnt eat, he had mucous regurgitation of food. They prescribed him high calorie shakes which he managed and helped. By the second chemo he could eat and swallow really well. heres wishing you a smooth journey back to health. x

Thank you for your reply

Hope you and your son are doing well now.

Re endoscopy, no i didnt get referred straight away id be going back and forth to gp about trouble with regurgitation and pain when eating. They just kept prescribing ppi medications. After some months and nothing helping i was sent for the endescopy. Im currently drinking complete meal drinks to avoid the regurgitation/mucus but have a nurse calling me tomorrow.

Sending you fond well wishes for both you and your son x

Hi Kazza, 

Sorry to hear your news and wanted to share my story. My wife was diagnosed with oesophageal cancer at the junction to the stomach last September and we were both in deep shock for a few weeks. Once we started to get more information, we were able to process it and form a plan. It is the unknown that is the worst part.

Symptoms to diagnosis took from June to September via the doctors. They didn't refer her until things were getting really difficult. 

Once diagnosed, things moved swiftly. One lesson we learned was that if you are offered a nasogastric tube for feeding, then take it. My wife declined and tried to manage, and in the end was admitted to hospital due to dehydration and malnutrition. It took a few days to get used to it, but quickly became completely normal for her day to day. If she had taken the option early on, it would have saved a lot of time and discomfort. 

She had 4 cycles of FLOT chemo followed by surgery followed by another 4 cycles of FLOT chemo again (20% lower dose) and she finished her treatment last month. The surgeon removed her esophagus and used her remaining stomach to re-connect. Surgery took all day and into the evening, but she was up and awake the next day. She was in hospital for a week. For something so complicated, they made it seem so routine. 

The surgery was Robotic and was all performed via keyhole. 

She is eating normally again now be it small meals. She can manage a medium Jacket Potato with tuna in one sitting but without an esophagus, she needs gravity to get it down to digestion. She can eat way more than we ever expected and has only a few side effect, mainly if she eats too much in one go and can't burp.

The treatment she received from the NHS was first class. The only issues we had were that the dieticians were not easy to get hold of.    

So, hang in there.. We are all her for you if you have any questions. Everyone's journey is different, but together we are stronger. 

If you have any questions for me, then i'm always about. 

Alex 

Thank you so much Alex for sharing yours and your wifes story, it is comforting and reassuring for me to hear how well she is doing now.

So glad i found this forum as i was feeling so lost and frightened.

Take care 

I will share a story that made me realise how far treatment had come.
The day of surgery I got my call from the surgeon around 9pm to say she was ok and in recovery. It had been a long day with no information.

They said I could visit the next day but for now she was sedated and comfortable.

The next morning I was up early and eating my breakfast wondering what to expect when I arrived.

As I thought about it, I received a text from my wife asking if my daughter had done her homework! I just sat and laughed as it was the last thing I expected.

I guess what I’m saying is that although you must be terrified at this stage, just try to take it all in little steps and when it seems overwhelming, reach out and chat. 
Trust in the process and ask lots of questions.

I sum up my experience of the last year as being on a Rollercoaster. One minute it’s fear, the next it’s fun then it’s calm. I learnt that in my case I just had to hold on and ride it as I could experience all of those feelings in just a few hours.

Do you have a support network of people around you?

Thats a brilliant call to receive!! Had your daughter done her homework? Hehe

I can imagine the rollercoaster, it has only been a matter of days for me so far and im already feeling that

Yes i have a great support network, good friends and a very close family thankfully