Oesphagectomy

[Icecre]

I'm just new here I'm having done my 6 rounds of flot treatment now I am going for my surgery on the 2nd of August. If anyone can share there experiences would be great thankyou

[LarryLamb69]

Hi there , Hope this finds you as well as can be , i am a 54 y/o in Ipswich, Suffolk , UK . I am now at the end of my post op FLOT chemo, I was 4 cycles ,then my oesophactomy (Ivor lewis) surgery and now on another post surgical 4 chemo FLOT cycles.

I must be honest and say chemo has been the harder part for myself overall , the op itself I was in and out within 8 days , 4 days on ICU then to a ward , I did push myself toget active and wihtout doubt this does help post surgery. It is slightly painfull but discomfort is / was my main issue over that period ,normal pain relif controlled that though.

Pre - surgery while on chemo I lost a fair bit of weight..as like most I could not eat that well anyway , and chemo even made it a bit worse , I had a short break between chemo and surgery (6 weeks) and made full sue of that , to get as fit as I could and also build a bit of weight back on , as once agin this can be an issue post surgery , as you not eating and then have a modfied stomach (this may be not an issue if you have spare weight to start with , but if already slim it can be).

I have tried to look at being pragmatic / posative throughout , not always easy , but break treatment into blocks and tackle each stage individullay , if you think of it as 1 years + of treatment that can be daunting!.

My wife gets frustrated , makes a meal for me to just not be able to eat it ,badges me to eat when I dont wnat badgering , I know it is for my own good but at the time it is difficult , so explain this to any partner , despite being arounf and with you they do not maybe understand how you feel or indeed your thoughts..my were all about my famlies future..not mine! ,,but try and be open,,can only help!.

Post op..discomfort around surgical wounds ,path of the course I think ,and new stomach can feel uncomfertable at times , you also may need to look at how you sleep , along with your eating regime or taking in required fod can be difficult to start with , (more weight loss in my case)..Lifestyle changes also , going out to eat..i have just taken the viewI just wontget value for my money....lol...as can eat little ,been a few places and simply had a starter a a main , and they wre all happy with that , dont restrict yourself , live as you do now just with modifications.

Well thats a quick ramble , please do feel free to ask about any area you have questions to , happy to reply..hope my waffle made sense and was of some use.!!

All the very best ,

Ian

[Icecre in reply to LarryLamb69]

Hi Ian I'm quite anxious about it coming back going to go through such a big surgery. But then I was told lucky to be getting surgery because its curative.

[Artiquety in reply to Icecre]

If they say curative go for it with a strong positive attitude, like Ian said above, it will save your life. Albeit life changing, good luck, we are all different in pain threshold, with different outcomes, some better than others. We live in hope and wish you every success xx

[Icecre in reply to Artiquety]

Thanks I'm getting a bit anxious now but this operation will save my life. Its strange I feel perfectly healthy at the moment. And I'm going in for a big surgery but has to be done some people unfortunately dont get the chance thankyou 😊

[Artiquety in reply to Icecre]

It’s not a walk in the park - seriously I was in the same boat as you but you will get the satisfaction of getting more than 1/2 year to live and they will take the nearest glands/lymph’s away to diagnose the size of your tumour properly. You take good care of you and please put in those calories before you going in. X

[Icecre in reply to Artiquety]

Oh I am njoying my food now . It feels strange feel really healthy yet I have to go through a big operation. 😩 but at least I'm getting the operation that's the main thing

[Artiquety in reply to Icecre]

Get as much cardio fitness in, your lungs will need to clear -when you get out of theatre. Ask for the dvt/oedema boots through your surgery, that will help your legs. It’s quite a common procedure and you will be looked after, where are you having it done?

[Icecre in reply to Artiquety]

I'm having it done in St james hospital in Dublin they are the centre of excellence for that type of cancer in ireland. Im doing a workout on a bike via zoom every morning from the hospital. Not long left now 10 days and it will be out thankgod.

[Icecre in reply to Icecre]

Trying to say that to myself to keep positive and the cancer is coming out .

[LarryLamb69]

Fair as it is a major process, but as mentioned not as bad I was expecting ( everyone is different of course), but once again if "curable" with this inset if cancer that all you can ask, the surgery as I am sure you know is definitive, just as for everyone we just have to hope cancer does not come back, Take it but by bit and you will get there!

All the best

[Icecre in reply to LarryLamb69]

Thankyou x

[Julieanne60]

Hi Icecre. I’d agree with everything LarryLamb has said. I had my operation 31st October last year so I’m getting to almost nine months post op. I had a three way Oesophagotomy which means I had open surgery around the back/rib area, abdomen and neck. My cancer was higher up in the Oesophagus and this is the usual course of surgery. I also had Chemotherapy and Radiation, but not FLOT so I can’t comment on that.

However, I can comment regarding the operation as I believe we all have to expect to alter our normal eating habits in some way. I was never a big eater in any case but it is important to eat smaller meals regularly and try and keep your weight up. Obviously, during the early days after the operation, you have to be careful and eat soft squidgy foods, but it didn’t take that long for me to start eating more normal foods.

I found everything came much quicker than I thought it might and by that I mean eating, fitness, travelling, normal life really. Naturally you’re very tired to begin with and I had a nap most days for the first couple of months. I also found the pain under my ribs took a long while to disappear (about five months) and I still feel a pulling sensation if I try and carry anything heavy. It’s not bad, just a gentle reminder of a big operation.

I was 63 when I had the treatment and the operation, and I was lucky in the way my body tolerated everything. My consultant thought that my fitness played a part, so anything you can do now regarding eating well and fitness can only help you.

I know this sounds strange but I even felt a bit excited to be having the operation. I felt I was fighting back and taking control.

I’m sure there are loads of things going through your mind at the moment. It’s only natural, but I wish you luck in your treatment and if there is anything else, please post. With best wishes, Julie

[Icecre in reply to Julieanne60]

Thankyou x

[liz_crisp]

Hi Iceacre, I’m 14 years post op, when I had the op it was an open op not keyhole, and as mentioned before you need toget as fit as possible before and if you can put some fat on it will be useful later. If you have the chance of the op take it not that many do it used to be around 10%were offered the op. It is a long slow recovery and life will change, but it’s not bad just a bit different. Have patience and listen to your body if it tired rest as you won’t have the reserves,. And eat small meals or just graze all day , your gut has to relearn how to process food and drink and as it does so it changes. It’s like a baby starting solids again and size wise it does get a bit better. Like Larry I still eat a starter in a restaurant or I take my own Tupperware and put half in it to take home, or if I really fancy a main course I ask for it to be served with the starters so I get lots longer to eat it. Or I will just have a dessert which I often order to come with the main course then I can eat slowly and enjoy a glass of wine too. Don’t worry about weight it took me 5 years to put on a stone, I’m now 64kgs and I eat cakes and chocolate for energy.

Good luck and let us know how you are doing cheers Lizzy

[Icecre in reply to liz_crisp]

Thankyou so much lizzy xx

[Mbads in reply to liz_crisp]

Hi liz very inspirational to us all that you are 14 years post op how old was you when diagnosed

I was just turning 55 dec 2022 when diagnosed with op march 23 so still adapting to the new ways of life ! Iv two young sons 11 and 9 but my wife has stage 4 breast cancer that has spread and is terminal . I’m just preying that I can stay healthy to fullfill my promise to be here for my boys .

I’m feeling much better as time goes by but understand we have these days where your guts don’t play ball or I get rib pain it all feels like I’m walking a tight rope some days .

[Cavalier3]

Hi Icecre, I agree with everything already said by Larry & Julie. I was diagnosed 2 days before my 51st birthday. I had Chemotherapy every week and radiotherapy every day for 5 weeks. I had open Ivor Lewis in March 2021. The ICU is a bit of a blur, I was discharged on day 7. Make sure you have someone with you for at least 2-3 weeks. The incision across my abdomen affected my mobility for a few weeks. My favourite recovery dish was grilled fish and buttery mash. I just set myself goals. I went for a walk every day as soon as I could. Every day I walked a little more. Eat little and often. I’ve never felt hungry since surgery so this is still difficult. I have to remind myself to eat. Being in this group you realise that we all face the same challenges but also we all recover differently. The big thing for me was finding what foods I could and couldn’t tolerate. I still can’t eat tomato skins and I’m now gluten intolerant. Life is good though. I’ve travelled America, Canada, just spent a week at Glastonbury. Keep as fit as you can, eat well, don’t let the diet restrictions affect your social life. Thinking of you on August 2nd. Please let us know how you get on and we are all here for any questions you might have. Sue

[Icecre in reply to Cavalier3]

Thanks so much sue xx

[Artiquety]

good luck with your treatment, if you kindly read my bio and people who have replied, there are lots of hints and tips x

[Icecre]

Thankyou I will do

[mgloughran1]

I was diagnosed late stage 3 in January 2014 at age 51 and was not offered much reason for optimism during the early days. I chose to listen to the only person who gave me even a little hope - my thoracic surgeon, who said his only goal was a complete and total cure. And here I remain 10+ years later, not only feeling great but also a new father to a one-year-old baby daughter!

Underwent the typical course of treatment - chemo weekly, radiation daily, wait for the results on pins and needles, and the big surgery when that news was good.

I agree with all the comments here - get as fit as possible, get as fat as possible. And go in with realistic expectations - it is going to be a bear if your journey is anything like mine was. But with a positive attitude, it will be so much easier. You can do it and we are all rooting for you!

[Icecre in reply to mgloughran1]

Thankyou so much xx

[Icecre in reply to mgloughran1]

Thankyou so much I appreciate your story x

[grandylynda]

Hi, I had all my treatment 7 years ago. I think others have covered most points. I would stress taking 1 stage at a time and to go easy on yourself during recovery. The surgery is huge and it takes time to adjust to new plumbing. Like others I take a tupperware box when eating out to bring home spare food. I find a lot of places don't respond to requests for less etc . 2 places local to me I like are an independent bistro who do a set menu. They happily let me have 2 starters and charge less than the normal 2 course price. I find carvery are usually happy to allow a child's meal although one local Toby won't. As for recovery set goals one at a time and don't put a time limit for achievement. I think this is how I went downhill mentally as I was not meeting my deadlines. It will take as long as it takes and we are all different. Praying that your surgery goes well.

[Icecre in reply to grandylynda]

Thsnkyou x

[worthbanner]

I am American and thus had a bit different course of treatment...FLOT followed by 30 days of radiation before the Ivor-Lewis and no chemo post-op. This was 10 years ago and I was 68 at the time of the operation. Lots of good advice has been given earlier and I would only add a couple of things--it took me a year of experimentation to adjust to a comfortable diet in terms of frequency, amount, and what to eat but it is now second nature. Likewise a sleeping routine took getting used to---at first sitting halfway up then gradually being able to sleep on my side as I always had done before the operation. Reflux has been a continuing issue but Pantoprazole and Gaviscon Advance keep it at bay. I go to bed with a couple of Gaviscon Advance tablets in my mouth and can thus sleep nearly flat. There is light at the end of the tunnel--after the year of recovery, I shoot my age at golf regularly.

[whasler]

Hi there

Good luck with your op. I was 57 when I started chemo and a runner so pretty fit. I had chemo either side of mine in Portsmouth in Aug 21. First round of chemo takes a bit of getting used to (taste, hair loss etc) and the post op chemo I found more of a struggle because a) mentally they took out the tumour and cancerous lymph nodes so "why do I need more chemo?". (Just in case there's more cancer they couldn't see) and b) physically as I was post op. How you recover post surgery will depend on your age, fitness and any complications. I needed a chest drain so was in for 18 nights. You'll need some ear plugs and an eye shield to aid rest in hospital and then when you're home, take the advice of the dietician in terms of what to eat (lots of fat and protein) and not (fruit and veg don't build bulk so avoid in short term!!). I was in hospital at the back end of Covid which meant my wife could see me once a day but no other visitors permitted - I was an hour from home anyway. How people coped in hospital in 2020, I can't imagine, with no visitors and /phones/tablets struggling with the NHS wifi.

It is life changing but also a life saver!

Will

[Icecre]

Yeh thankyou it's life changing but a life saver !! Just have to get on with it I'm 48 and would be fit so hopefully recovery won't be too bad.

[JE1983 in reply to Icecre]

Hoping you are doing well post op?

[Icecre in reply to JE1983]

Hi je1983 my operation had to be stopped half way through because found small microscopical cells in my stomach , cancerous. So now I'm back on chemo again. They were to small to be seen in pet scans. I was very upset obviously. He couldn't do operation obviously because they could spread he said through recovery after the operation. So I have 6 rounds of chemo 2 done and then scan. Holly scan will be good I'm fine on the chemo just tired the week of it no sickness so far. Thankyou xx

[JE1983 in reply to Icecre]

Sending you lots of love I’m sure that was so difficult. Glad to hear the chemo is going so well and hope the scan shows a great response xx

[Icecre in reply to JE1983]

Thank-you xxx

[ChickenDanshak]

Hello, I would agree, I have an Ivor lewis robotic procedure on the 29/2/24, I was in ICU 3 days and home on the 6th day, I would rather have the op again then the post op Chemo, I managed 2 post op rounds.

Is there anything in particular that you would like to know?

Take Care

Jennie ✨🌻

[Icecre]

Hi jenni I'm going in next Friday for my operation I'm a little nervous. I'm 48 in very good health and fit. It's a bit more pyscological with me fear of recurrence but I'm sure as time goes by that get easier. And with regular checkups caught early thankyou xx