Hi Everyone, I was recently diagnosed with cT3N1M0 adenocarcinoma GOJ cancer and would love to hear from you.

Hi there,

I am 8 months ahead of you, having received a very similar diagnosis to your own in October 2023. I was also exactly the same age as you when diagnosed (turned 60 in May) and I am also male with a wonderful wife.  I am coming up on 6 months post-surgery now and 2 months since I completed by adjuvant FLOT (although I only managed 3 cycles). What I can tell you is this;

1. You have a very difficult year ahead of you (no point in beating about the bush) and there will be times when you will really struggle with the side effects of your treatment. Recovery is a long and slow process. Even 6 months post-surgery I am nowhere near feeling back to normal. I was warned that this can take a year or more. You will always find very helpful advice and encouragement here from those who have travelled this path before you.

2. You are lucky to have an amazing wife as she will be your ‘support team’ throughout what lies ahead and you will never appreciate her more than during the next few months. An extra pair of ears to listen to what you are told at appointments, coming up with the right questions to ask and helping you to understand and remember the answers, driving you to chemo sessions and visiting after surgery, etc. 

3. Have realistic expectations of yourself and don’t try to look too far ahead. Appreciate when you have achieved small milestones (such as the first time you are able to walk to the end of the street after surgery or are able to reduce your medication). 

4. Fatigue is going to be a big part of your life once you start treatment. I still go for a lie down or snooze most afternoons and it can be very frustrating how little I am able to do before I need to stop for a rest (I used to be on the go all the time). Don’t try and fight it.

Feel free to ask any questions you have. Somebody will always respond. Good luck to you both. CB

Hi cool blue 

All I can say would be the same as your post . I am a year post operation  and still can not get things quite right with eating  certain  foods , i can manage a small pizza but no crust   can not tolerate bacon but i can have pork sausage 

Gone mad on prawn sandwiches but this shows things are getting better slowly 

Stay Strong everyone remember 

God only gives his is hardest battles to his strongest  soldiers 

Wow, thanks Cool Blue, many similarities between us. Thanks for taking the time and sharing your insights, this is really helpful to me and very practical. Keep in touch ! Thanks.

Thanks Nicnac12, its great to hear a positive outcome and your story. Thanks for the advice.

I am probably a rubbish soldier, but my tin hat is ready. Cheers,

Hi, 

I was diagnosed last Oct, after re-diagnosis the same type as you T3, N2 M0. I am now at the same place as CB, operation 29th Feb. 
1. Once you start your first rounds of chemo, the symptoms you are having may lesson or go completely.

2. when you can eat, eat all you can as you will loose weight, keep as fit as you can, walk, swim or cycle.

3. I had the Ivor lewis robotic procedure and was discharged on the 6th day, I don’t know how I did this, I was terrified but I just went into positive fight mode. 

3a. I could only complete 2 post op rounds, my body just couldn’t cope with the chemo. 
3B. Everyone’s journey is slightly different, use your team for support. OPA have a web sight and a forum also, there may be a local group that meet face to face. I live in the Portsmouth area and we have one called SPLASH. 

hope this helps, oh get a PIC line fitted, so much kinder to your veins 

take care Jennie

That's great advice Jennie, great to hear from you.

The PIC line looks a bit mediaeval, but my veins are already knackered from repeated cannulae, so I will definitely have one.

Evidently my surgeon is a firm advocate of Ivor Lewis/robotic procedure, so I am also expecting this. Good to hear you were out so quickly.

How are you now, may I ask?

Hi, 

I am now 24 weeks post surgery and 9 weeks since my last chemo. 

I am really well, I walk most days, swim at a health club which has a steam room and a jacuzzi, the pool is 17m, I am up to 9 lengths. I can do most things but am careful with the heavy stuff. It is a case of being sensible. I was 15stone when I was diagnosed I am now 1010. Ido not want to put the weight back on so it is all about toning.

Eating wise it has been tough, I suffered with what is called dumping syndrome, I still do but lesser. I feel it is a combination of getting used to food, not eating big meals and eating slowly. Limiting carbs and low sugar. 
I have protein yogurt (I tried a few before I found one for me) and strawberries, raspberries or blueberries, I had lunch with my daughter today at Wagamama, Duck with rice, very nice, most of the rice is left as to much. 
I have no hunger drive and my full feeling is my throat is stuffed, haha. 
It is very much a learning journey.

When do you start your Chemo? Happy to support along the way if you need any. How is your eating ATM? 

best wishes Jennie

Hi Jennie, thanks for replying. Being able to eat out with your daughter again must be joyful after everything you have endured ? Very encouraging to hear that.

Chemo is confirmed for next month (4x rounds of FLOT). I am seeking an earlier appointment, as this is a long way off and my symptoms are deteriorating. When I was diagnosed in July, I was relatively symptom-free, however dysphagia, fatigue and nausea are setting in.

I have lost 4kg, but I can afford this (haha, large boned!). I continue to eat healthily, but, toast, bread, bran flakes and some other foods are now a no go (I feel nauseous thinking about it).

I am thriving on protein powder, fruit and yoghourt smoothies made in a Vitamix with ice. Pasta is OK in small portions, bulgur wheat and veg, veggie dishes, etc are going down well, as well as soups. I am drinking a lot of water, which seems to help.

I also have a pulmonary embolism (large chest blood clot caused by the cancer), which is making me breathless and big constraint on keeping as active as I would like. I have suspended my health club membership, but I am otherwise doing what I can to stay active and walk every day.

I am also struggling with fatigue, evidently caused by a combination of the pulmonary embolism and the cancer. 

I'd really appreciate keeping in touch as I step into chemo treatment, thanks for the offer!

Sorry you're on this journey. It sounds like you were already on a tough ride. I had the same diagnosis - T3N1M0, tumour just above the stomach.

Aug 2022 diagnosis similar symptoms some dysphagia and lots of fatigue

End of September 2022 - start of first 4 rounds of FLOT, engaged in the physios pre surgery exercise programme - I would recommend this if your hospital  has one

Jan 2023 - oesophagectomy using part robotics

April/May 2023 - final 4 rounds on chemo

My advice:

Pace yourself and exercise when you can - walking is great

Stay off Google

Break it down- every round of chemo is step through treatment is a win. Deal with it all one step at a time. Each bit of horribleness will end.

Accept help and support 

Now - I still sleep on a wedge cushion and take lanzoprozole everyday. I'm back at work full time,  parenting, housework/chores/gardening, going for swimming lessons as I was self taught, learning to cycle again and I go walking. Still trying to learn to pace myself which us an ongoing life long struggle lol but that's an ADHD problem.  

This forum is great for support and information.  I've found it invaluable.

Take care and all the best for your next steps!

Thanks so much SuzieW, this really resonates with my personal situation, it sounds very challenging and life changing, yet you appear to have a very positive and uplifting outcome. Thanks for sharing, it gives us all hope.

'Scanxiety' is now officially my new favourite word and your google advice is spot on!

Keep in touch. Cheers !