Wishing your wife a complete and speedy recovery so please op went well

Thats absolutely great news! Its such a hard time going through all of it but so good to know good progress is being made to get your lives back. My son had his op on 1st August, had a few complications, collapsed lung & pneumonia but he's strong so he rallied quickly once the IV antibiotics were given. He had all 4 of the post-op FLOT, finished December 23rd. He looks really well now and is on a clinical trial called Sarong where he has scans every 6 months to monitor things. Wishing continued good recovery to your wife.

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

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