Just had results of Gastroscopy and CT scan.6cm adenocarcinoma tumour at junction of Oesophagus and Stomach.Dysplasia on liver and lymph nodes involvement.Its a huge shock and I'm scared of having surgery even if it's offered because my brother died a few weeks after IL aged 58 for same thing.I live alone and have just taken on my second Cocker Spaniel ( he's 16wks old) my first Cocker is 3.5 years old .They are all I have and I'm feeling grief that I may have to give them up and not see the puppy grow up.It's been lovely to hear how many of you have had IL and survived .As an ex Theatre nurse I know what a big op it is. I'm here to try to hear more positive stories of all you survivors.
I feel I'm going to die before Christmas.
Written by
Pepperp0t
To view profiles and participate in discussions please or .
Hi Pepperp0t, I an sorry to hear your diagnosis and its quite normal to be frightened, especially as you go into it with knowledge and experience of the op and disease, many of us went into it in shock and basically no real knowledge of the procedure. but just went through the processs dealing with things as they happened, and wondering when it was going to end. Learning as we went along.
More people are surviving the op now and recovery times seem to be better than when i had my op 15 years ago. Now is the time to get fit and make the most of your cocker spaniels and train them up for when you won't have as much energy. Put plans in place for them for if you are in hospital and make it normal in some ways for you to be away occasionally.
There is alot of support on here. Have everything crossed for you that the initial investigations lead to a curative pathway. Sending hugs and strength. From a single mum of a 13 year old when diagnosed Lizzy
Thankyou so much Lizzy for your positive comments they really help me because I have no family and only a couple of friends so this forum has already been full of positivity for me.You are right seeing peoples stories on here of survival after the Op or even on the Palliative pathway is amazing, such courage inspires me.My dogs mean a lot to me and I'm this 🌄 Ng planning how I will manage them both if in hospital and when feeling rubbish.Thankyou seems inadequate.
It is a scary thing to go thru and life changing. My surgery was 3 years ago. Recovery is definitely a priority but challenging. Just remember how wonderful it will be when all is said and done. Believe in the power of prayer and you will do just fine.
Good morning Peoperp0t.. I can totally understand how you’re feeling as Liz has said you have so much awareness of this surgery. I had some as my Grandma had it when she was 59. I watched her go from a strong lady to a shadow of herself she was so poorly. That was many years ago. I had my surgery 4 years ago anged 51 and I was determined to stay strong. I concentrated on eating well, gaining weight before surgery keeping my weight up after. It’s not easy to eat when you don’t want to but my weight has stayed stable throughout. I have 2 Cavalier King Charles Spaniels and my Mum & Dad did take them for a few weeks. Do you have a friend who could maybe just walk them for you for a while. Stay positive and come here when you need help xx
Good morning. I am a survivor and my diagnosis (this day in 2018) was almost the same as yours. Liz Crisp is right. Many will have experienced fear, concern and trepidation. It’s not unusual. My curative route included 4 FLOT cycles, Ivor Lewis, then another 4 FLOT. Pretty standard and eminently doable for everyone. Your care team will be superb. They always are. Touch base with MacMillan who can provide outstanding support and counselling. Your dogs are key to success. Walk them and walk them and walk them. This will help you physically and mentally. The fitter you are the better. The fresh air and exercise, even during chemo, will keep you on top of your game. Finally do be proactive with your team. Particularly your Dietician and upper GI Nurse. They are there to provide you with specialist advice and an easy route to your doctors. Don’t be frightened to ask - an informed patient is a happy and healthy patient. Best wishes to you. You’ve got this.
I should have added that there are many other local and national charities that can help. The Cinnamon Trust helps the elderly during illness with dog walking and temporary fostering. cinnamon.org.uk or tel 01736757900 (Mon-Fri 10am-4pm). I’m sure they can help you manage your dogs when you are indisposed. Give them a call and this might also help you create a local support network. Best wishes.
Hello. Your story is quite a hard read and as you already know you have a challenging time ahead of you and strength of mind is such a big part of the process so a great step to reach out for other people’s stories.
I had my oesophagectomy 18 years ago. Like you, I am a nurse, and the very first death I experienced was a patient who had undergone an oesophagectomy. I could not believe it when I was told twenty years later that I needed one.
I decided not to have one right away as I needed to get to the stage where I realised I had no real choice. I thought that would allow me to cope better with any post operative complications. I rapidly deteriorated and soon realised this was the only option.
As they wheeled me to the theatres I was shaking with fear and as I was wheeled into the anaesthetic room I said to the anaesthetist “i am absolutely terrified”. He was fantastic and immediately gave me some sedation.
You know how big this procedure is. I think of it as transplant surgery but without all the rejection issues and the post operative period is certainly a journey of discovery. I also learned a lot about nursing and those things that make a real difference.
It was tough, but like you, I expected it to be tough. But the second week was massively better than the first. I was in hospital a bit longer than scheduled, as I got an irritating paralytic ileus, but once that settled I was permitted home.
The recovery at home wasn’t as bad as I expected. The improvement really was daily and as my energy levels returned I just got stronger and stronger. Learning to swallow again was possibly the most challenging bit but after some perseverance that does fall into place.
On relfection I was utterly mad to wait. The procedure made a massive difference to me and if I am honest it wasn’t as bad as I expected. The experience is now part of me. It made me a much better nurse and a better person and it made me totally reprioritise things in my life.
You are right to be fearful as it is tough, but be cautious that fear doesn’t drive your decision. I believe fear can easily lead us down the wrong path. Think of all the positives and the negatives and weight it up for you. But, for me, would I make the same decision today? Absolutely I would. Without hesitation.
It’s a terrible shock isn’t it. I had my surgery a year and a half ago and, to be honest, it terrified me much more than chemo. However, despite a few complications and an extended stay in hospital I now feel very well. I also feel fortunate to have been given the opportunity for ‘a cure’ - so much easier to say in retrospect.
I live alone too, and planning ahead was my way of coping, for my sanity as much as the practicalities! I set up online supermarket deliveries. I did lots of batch cooking so had a freezer full of food. I asked family and friends to be on standby for emergencies and lifts to and from chemo. I made sure someone had spare keys to my house. If someone offered to help, I said yes.
As you are aware, it’s not a pleasant surgery, and you are probably still trying to come to terms with your diagnosis, but the outcomes for this particular cancer and surgery are improving all the time. With two dogs I’m sure your fitness levels are better than most, and that is important, so you are already winning!
I hope you hear more encouragement on this website. Although everyone has a different story to tell, it’s a very supportive environment. Wishing you all the best. Jules
I meant to say - have a look at borrowmydoggy.com - my daughter has used this service. People who would like a dog but don't currently own one, can be linked with people who need help.
Sorry to hear your diagnosis. I had Ivor Lewis 9 years ago. Yes it is a massive op, but we are here as survivors. If you are not offered the op you would probably be offered Chemoradiation. The surgeons will advise you. Keep fit eat whatever you can.
I found friends rallied round to help out . There are normally dog walkers in each area that may help out when you can’t do it. You will be entitled to benefits that will help with extra costs.
Hi so sorry for your diagnosis. I had the op at 66 (diagnosis 5 years ago, op 4 years ago) I too was a nurse and I can honestly say after the initial shock, fear and then the chemo I was so happy to have that op still knowing what a big deal it would be. I just tried to put my faith in the 2 lovely surgeons who did a brilliant job. In a way having medical knowledge it will be easier for you after the op as you understand what is happening and why. It is a long slow recovery but we still ended up getting a puppy at the 2 year mark.it was the best thing I did. She has helped me enormously mentally and physically. It is difficult as you are in your own. There are organisations that help foster dogs whilst their owners are unwell. I know there are organisations who also dog walk for people. Try ringing McMillan charity if they have any advice/phone numbers? Best wishes. X
Lovely to hear your story,age at time of surgery and of your leap of faith getting the pupster.Inspirational...Us Nurses have seen so much it can be debilitating! X
I had large gastro/oesophageal adenocarcinoma with 28 lymph glands involved diagnosed Feb 2024. Four rounds of FLOT, then total gastrectomy (and some oesophagus and the lymph glands), then managed three rounds of FLOT. I also was shocked and frightened and felt grief about so many things. Over a year later I am cancer free so there is hope. I was Stage 3 so I hope you get the support you need to get through this. Do talk to Macmillan - even on their phone line. I am sorry you have this diagnosis but just take baby steps. Someone said to me 'You can't swallow an elephant' so just one foot after another. Any questions - please come back now or later. We are all here for each other and for you
Hello WOW.... respect and thankyou SO much for your inspirational story.Im forever grateful.To hear these positive stories is a real help to me.Be assured I will be updating and asking, questions and then I hope helping others as you have helped me today x
you’re bound to be frightened, especially with your family history and nursing experience. Things are so much better now and whilst it’s still a big op, recovery times and outcomes are greatly improved.
I have a cocker spaniel who was 3 when I had my diagnosis.
He never left my side during chemo and post op and was a great motivator for me to get fit.
I’m 4 years on and feel good. I’m back to normal fitness levels, 3 dog walks a day! My diet has changed but for the better and I’m so glad to be enjoying life.
Please reach out to us on here anytime as there are so many reassuring and positive stories to put your mind at rest.
Wishing you all the best and give those lovely cockers a big hug from me and Floki .
Hello Pepperpot. You’re bound to be worried especially as you lost your brother after an IL and the fact that you are so much more aware of the surgery than most of us would have been due to your experience as a Theatre Nurse. It’s a lot to process. The replies you have had have been so genuine and true. I was 63 when diagnosed (May 2023) and it came as a complete shock. I did google (once diagnosed) and despite all the frightening and negative things I read, it was the positive stories that I kept in my head and my heart. I found that if I began to read something that wasn’t positive I would just stop reading it. Self preservation is key and important to your mental health. Your dogs will give you that focus and of course, the opportunity to get as fit as you can. Please take care and I hope that you soon get a plan of action.
Regarding the care of your dogs, I used to use a company called ‘Holidays for Dogs’ when I had my Labrador. I tried a couple of sitters until I found the perfect couple who gladly and lovingly looked after her, allowing me to holiday with peace of mind.
Dear Julie, thankyou so much.I remain positive following the lovely responses I've had on this forum.Yes my dogs are currently my biggest concern and I will certainly look into " holidays for dogs".I can easily get walkers but it's that bit where IF I'm offered a curative pathway and surgery I will need to have them stay with people and then of course it's the how long for question that is just unknown.For now I'm a bit overwhelmed with all the organisation I have to do .But I'm going to break it down into phases and " eat the elephant a bite at a time" many congratulations on you continued recovery and health...it inspires me.x
Hi, I was certainly scared 8 years ago ( age 68) . when my tumour was found. Same place as yours. I had chemoradiotherapy followed by Iver Lewis surgery. Its been a hard journey especially the first year but I now have a life well worth living and you gradually get used to the changes in your body and how to adapt. I know someone who dog walks for the cinnamon Trust so that would be a good charity to contact about care for your dogs while you can't. Build yourself up for treatment, take one step at a time and use this site for moral support. The Opa office can also help at times. They put me in touch with a professional for advice when I was worried that everything was taking too long with the treatment plan. I think they also can put you in touch with individual " buddies" worth asking if you don't have much support around you as I think all of us have needed plenty of tlc and encouragement during recovery. Hope all goes well.
Hiya Thankyou so much for taking the time to tell me your story and yes I'm learning to take the walk a step at a time, slow myself down and let the professionals do their analysis.Its difficult waiting to know if they will propose a Curative or Palliative pathway for me, I've still got to have a staging Laparoscopy so it could be a few weeks yet!Ironically both the Laparoscopy and IL will be at the hospital I worked at in Theatres!
Take care of yourself you've done so well and Thank you again x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
2nd Ivor Lewis Within 11 months
Treatment for recurrent oesophageal cancer
