In the beginning

I was in the very same position as you 3years ago mine was stage 4 on the junction of the stomach & oesophagus. DEVERSTATED  I had chemo and 4 months later had the op to remove my oesophagus and half my stomach ,I am now all clear and glad to be here so dont assume the worst, all the best for you  Margaret

Hi

I'm so sorry you're on this journey.  Put plainly it sucks! There are still more staging investigations to happen- CT scan, PET scan, laparoscopy. The tumour they found in my oesophagus was also at the GE junction and it was 5cm before chemo. I've had the surgery and now doing chemo to mop up any undetectable cancer cells. During the surgery they will remove the lymph nodes surrounding  the oesophagus so even if its spread to any lymph nodes they'll remove them anyway. I know the waiting to know if its spread or not is so hard but hang in there. The PET scan will give a good indication if its spread or not. Definitely stay off Google - these are old stats and can't tell you about individual prognosis.  You'll need a moment to get your head around all of this. Personally I didn't tell my family for a while. My other half knew as soon as I did but I felt I needed to get my head around it all before dealing with my family's feelings (I've always been fiercely independent). I also wanted to know the staging and treatment plan before telling them. It was still hard telling them and I did find it difficult keeping such a huge secret but it was how I felt was best to handle it for me.  It may not be the right thing for others.  So I'd suggest give yourself a moment to think about how you want to tell others. I got my other half to tell some family members because I struggled to get the words out without blubbering incoherently. 

• Take care

Hi Margaret.

I'm so pleased to hear from someone with a good news story. You've given me hope now by knowing there is a future possible. I'm quite  accepting of what I have and am not morbid or emotional but thoughts just pop in your head. My practical side is planning what I need to organise for my family if the news is the worst. I am now thinking don't even think about that until you get that news. So moving forward I'm just going too believe things will be ok and are ok right now.

What great news about your progress in so happy for you. Thank you so much for your post and all the best for your continuing good health.

Hi.

I was given the news after endoscopy on 5th September. "It's quite serious" he said. I could see on the computer there was a white mass in the imaging but nothing else was explained. I was told biopsies were sent. I spent the weekend analysing the "Does that mean a little bit serious, or a lot serious" and fluctuating between "aww it's nothing!"

My mother had driven me to the endoscopy, and I had not let her into the room when I was told. She boviously knew something was wrong. I told her it was benign and nothing to worry about but they would perform some scans. This reassured her somewhat. I didn't like lying but I wasn't going to give her that burden without knowing the outcomes. I slowly broke the news to family over the following weeks in baby steps and emphasied that it was considered "curative".  The following few weeks was bad for me emotionally as I believed I didn't have long left but I kept that from family and especially the kids.

After CT, PET scan, endoscopic ultrasound, and a lapracscopy, it was confirmed I had a 12cm tumour, stagged at T4aN1M0 (T3N7M0 after chemo/op). Family never quite believed me when I would update them because of the initial lie but I made sure they knew the justifications why I told them and that now I knew there was a positive outcome, or a chance of one, I was being on the level. This avoided a lot of emotional pain for them at the start but caused doubt for a few weeks. I saw this as an acceptable trade off - if I went back and went through it all again I would do exactly the same, it's not often I have zero regrets in life (normally the absolute opposite) but I believe I did the right thing here - I'm normally very open and factual so this did go against the grain for me. 

I was staged & treated at Royal Surrey Hospital in Guildford (operation was 4 weeks ago - fully robotic with DaVinci) and I am blown away by the level of treatment, I could not have asked nor expected better before during and after. The staff there are simply amazing.

I hope all goes well with you. As my oncoligist has said, even if it has spread the treatments are getting far better than they were several years ago and you still have a chance. I believe with CRISPR / AI / mrna / Immunoherapy etc developing over the next few years and with clinical trials I'm still hopeful for the future even if there is a reccurrance. 

All the best.

I'm soon to start FLOT chemo at Royal Surrey in the next few weeks.  Am interested to know was the surgery undertaken at Royal Surrey or at Mount Alvenia hospital in Guildford.  I am due to meet the surgeon at Mount Alvenia.  I am currently deliberating whether to go private.  Just would like to not be on a busy ward during recovery.  What was your experience of NHS?  So far I have had an exemplary and very speedy response from endoscopy on 28th January to further staging tests being organised promptly after cancer diagnosis.  

In my experience/ knowledge (as so someone who cancelled his life long private cover a few months before diagnosis) there is little to no benefit in private insurance for cancer, or urgent treatment.

Surgery will be at RSH. Recovery will be in ICU there before moved to general ward. If I had my own private team of surgeons, oncologists, and nurses I would not have received better care than the NHS services at RSH. The staff there are amazing.

The main difference I know of, and they are minor imo, is: you get a picc line instead of portacath, you get given 5 separate shots of injection to promote white blood cells during chemo instead of a single shot, and you don't get a private room for recovery after ICU discharge. the initial ward I was put in was terrible as it was next the nurses station for those who needed more attention  I was shortly moved to the correct one which was furthest away. Lovely group of people there, and zero complaints. 

Hi, thanks so much for sharing your story. 

Like you I was told after endoscopy that biopsies had been taken and that I had a 3cm cancerous tumor close to the top of my stomach. Two days later I was asked if I could get to the scanner to fill a cancellation. Needless to say I jumped at the chance.

Having followed this by reading Macmillan's book on oesophageal cancer, I am now aware that I will have to have chemo/radiation treatment and an operation to cut out the bad stuff and put my stomach back on the end. I don't really mind that. It will save my life. 

What is frustrating is the delay between diagnosis and first consultation. Having no answers or treatment plan is the worst thing for me right now.

Hey, I'm with you on that. The lack of information was a massive problem for me. I think the only weak spot in RSH was the lack of information, the amount of time spent thinking about "what if...did they mean" etc - espiecally with regards to what else can be done to mitigate surgery.

My endocscopy was on a Friday, I was called in for the results on the following Tuesday if I remember correctly. But then it was two months of staging before treatment. It feels like you're jumping through hoops just to earn the chemo which frankly I was ready for as soon as they said, "You have cancer."


There's great list of questions on a site SuzieW recommended which I hope helps:

https://www.smartpatients.com/conversations/questions-to-ask-at-your-first#top


Good luck. I hope all goes well.

Hi my husband’s staging was the same as yours and initially we were told that his tumour was unusually large and bulky and there was a significant chance it couldn’t be removed. Fortunately it could and he had the operation 5 days ago in Bristol. I was wondering how you were coping now you’re home. Will you be starting chemotherapy again? We’re expecting 4 rounds of FLOT which seems to be the norm.