Surgery after four round of FLOT

Hi, it's good to hear of your positive Flot treatment results. That must feel like progress. I had 4 rounds of Flot (in 2018) which shrunk my tumour enough for me to be able to eat without a feeding tube which I'd been on for 3 months. Then I had to prepare for the operation. It was the part of treatment I feared the most to be honest as it's so thorough and invasive. However, I and many others get through it and gradually recover to live healthier and hopeful lives. However, I won't jump ahead, dealing with each day as it comes is best thing to do I found. I tried to get a bit fit for the operation, I'm not the gym going type but lots of walking and moving generally, basically just not sitting around wasting and worrying too much. I'm certainly not the fittest of people but my body and breathing recovered quite well in hospital. They get you moving quite quickly and give you breathing exercises to get your lungs going. So trying to keep your muscles and lungs active beforehand helps. It also helps to put on some weight if you can because we do lose a lot during and after the operation as we learn how to "stomach" food again. Our whole system is out of whack with the trauma of the op so the whole gastro, brain, bowel connections take sometime to reconnect. That's how I saw it anyway. Keeping your mind as calm as possible is a big thing to try do also, easier said than done! A bit if mindful breathing, meditation, relaxation  there's  lots of apps and YouTube stuff if that's your thing (I was already doing a bit and it did help me live in the moment and not get too overwhelmed with fear too often!). I found that by the time I was waiting to go down for the operation I'd calmed down because I was just so desperate to get it over with. I didn't know a thing about it until I woke up afterwards. So, well done so far, there's nothing easy about it but you're doing it day by day and yes, I can reassure you it's possible to feel well, despite eating adjustments (they're different for everyone but I certainly enjoy food again though that's hard to imagine straight after the op.) Wishing all the very best for a health recovery. B

Hi less than 2 year ago I was diagnosed with stage 4 esophagus & stomach cancer on the junction. I had 4 rounds of flot  chemo and then the big op about 9 weeks later .  After 2 weeks went home, Slow but sure progress on my 3 month check up there was no sign of cancer I have had a few issues with eating and after 2 stretches' I am now back to normal I have regained nearly all my weight back and feel fine.  Hope you have the same results  wishing you all the best.  x

1. Hi I am 4 weeks post op this week and as with the other contributors comments you will be obviously to the surgery itself one minute your in the amethysts room having a epidural inserted into your back the next you wake up and it’s all over so don’t worry about the surgery, with regards to pain and discomfort they are excellent at managing both yes you will be sore and have various tubes and drips fitted but it’s nothing are bad as I  have imagined, I was released after 10 days with no complications and sent home with morphine tablets to control the pain the recovery process is slow and you will have good and bad days but you will steadily improve I am eating a soft diet with no real issues and continue to feed overnight via my temp j-tube which again isn't a big issue so given how big an operation this is I can’t complain, the biggest pre op fear I had which I am sure is yours is fear of the unknown you will have had 4 sessions of FLOT in preparation and suddenly there over and the surgery looms and you apprehension builds but try to focus on the end game you will look back on this time one day soon as a distant memory place your faith in your surgeon and team they have your best interests at heart you will come through this and remember it’s to save your life all the best I hope your experience is as positive as mine was 

Hi good luck with your surgery it is major surgery as I am sure you have been told and it’s baby steps for most after surgery with eating but it truly gets better , I am two years now and can eat anything and enjoying food again , feel free to ask me anything  as I had a few problems afterwards good luck x

Hi hansharp, 

I was treated FLOT --> Surgery --> FLOT in 2018 and am in remission and leading a relatively normal life. 

I think my anxiety of surgery was unfounded? It is major surgery but you will be well cared for in hospital post surgery and my pain management was excellent, and I hope yours is too?

I found my post op cycle of FLOT harder to cope with than the surgery. I think it took me about 2 years to stop being breathless after exercising, but eating on 2/3 of a stomach was not a big problem for me. I do eat smaller portions and eat more frequently and my taste has changed a bit, i.e. I now like some foods I didn't and visa versa. 

As for preparing for surgery I went a bit mad at the gym prior to surgery going about every other day to build up my upper body strength. I was in a weakened (and bald) position after completing my first cycle of FLOT but I think the training helped me recover from surgery quicker? 

Wishing you all the best with your surgery.

I would just like to say a huge thank you for all your responses. They do reassure me. My biggest concern by far is living with half a stomach and the effects of this day today. The surgery itself i am not so worried about, daunted but i know it will pass and i will be taken good care of. I have spent the last month weighing up the pro's and cons of surgery vs watch and wait. Such a tough decision to make, but these replies have helped. 

I meditate and do mindful breathing daily and find this so helpful too Bernbe. Really calms my mind and is what has gotten me through all of this, especially the early weeks, scans and waiting for results etc. I know it will help with the surgery build up and post op too. Living in the moment is all we really have you realised after a diagnosis like this. The reconnection of the gastro/brain/bowel is helpful to think about and be patient with. is there anything that helped with this? 

Alfie'smum that's good to hear even after a few issues you were back on track and able to get back to some normal. So glad to hear you have regained the weight - how long did it take if you don't mind me asking? I am naturally petite  and know the hospital  are slightly obsessed with my weight (i have a BMI of 22).  I have a restricted diet and i am mostly vegan these days as i went off meat,. fish etc when this started but plan to make fattening soups etc with nuts and coconut milk,. Could people eat hummus, porridge for example? I'm really not sure what to expect on the diet front on terms of soft foods. 

Greame, so glad you had a good experience and really reassuring to know there have been no complications. I won't be having a feeding tube and will be fed intravenously initially, which i am pleased about, the plan is for me to be eating enough on discharge. The fear of the unknown is definitely what is bothering me the most. i  have zero idea of what to expect in terms of eating and recovery and find this is on my mind a lot. A healthy diet is super important to me as i've had gastric issues for years which diet effect massively. 

Jackie, good to hear you are fine a couple of years on. What type of problems did you have if you don't mind sharing? 

Anon - do feel me anxiety will also potentially be unfounded. I was anxious about chemo but thankfully sailed through that with no toxicity amazingly. I am not looking forward to more chemo and and see that will be the toughest part, when your body is already at a low. I've also been prepping with exercise and feel great at the moment, really strong and fit. It feels so odd to be unwell and feel so healthy! Is eating more frequently a pain? Half of stomach is being removed but can be stretched so i am told if needs be.  i am not a huge snacker and totally used to three meals so the idea of always eating seem

Do any of you have on going issues with acid reflux after the op? Do you a have to slept propped up? could you do yoga type exercises - downward dog etc? Im curious as to how the body works without the vlaue to prevent acid flowing upwards.

Many thanks in advance, it's v much appreciated. 

I personally sleep with a foam wedge just in case I don’t really have much acid reflux and can almost lie flat however I have had a few episodes early days as for the FLOT your very luck to have had no toxic reactions I have peripheral neuropathy however I am still going ahead with the post  op cycle as I had a fantastic response to the first cycle I was T3N2M0 pre op and after pathology and the removal of 28 lymph nodes I was T0N1M0 the primary tumour was in effect gone with only one lump node involved unbelievable, I hope you have a similar response there will be challenges ahead but it’s all worth it when you hear your essentially cancer free good luck  

That's incredible, what an amazing result. If my results are anywhere near yours i'll be over the moon. I feel very lucky not to have had any toxicity as yet. my bloods have obviously been all over the place but physically i just felt tired by the 4th round. I appreciate the post op chemo is a different ball game all together and I hope yours goes well and you continue to make a great recovery. Cancer free is the aim and i must stay focused on the end goal as much as its possible. 

Hi hansharp, 

I went vegetarian through treatment that stopped me being sick (but didn't stop me feeling sick). As for ongoing issues with acid reflux I'm on Proton Pump Inhibitors which I think we are all prescribed after surgery? They help. Like Graeme62 I also seep on a foam wedge which I find essential. You can get a discount for this at the Oesophageal Patients Association https://opa.org.uk/bed-wedge-special-offer/. I can no longer eat and drink at the same time. After eating I sit very still for 10 minutes and do not put my mouth below the level of my stomach of at least a couple of hours after eating (be careful filling the dish washer!). I have to have regular pyloric dilations to stop coughing fits after eating and while asleep. Apart from this life is pretty normal for me.

• Thanks for this. I’ll invest in a wedge, I’m currently propped up by a mountain of pillows which after much reorganising can be pretty comfy. I stopped drinking with meals a while ago in prep for this and found it fine. It’s amazing the habits you can just drop with no drama.  I also try and stay up right after meals, and the dish washer is tricky! I’ve been working on strengthening my lower body for all the squats it’s going to be doing post op instead of bending. Much better for your back is the mantra I’ll be telling myself. I plan to start some Tai Chi or similar once I’m able to. I’m currently working out loads in prep for Friday’s op and hoping for a smooth recovery.

So glad to hear life is pretty normal for you, really encouraging to hear.