Oesophageal cancer completed treatment

So pleased for you both, the sound of that bell must have been wonderful.  My husband is 17 years post surgery and we are grateful every day for his recovery.

Wishing you both every happiness and continued progress. x

That’s wonderful, gives hope to people just diagnosed 

So happy for you both.   

Thankyou x

My husband was diagnosed with oesophageal cancer 10 weeks ago pet scan showed no spread so greatly relieved. We started flot 2 weeks ago with immunotherapy which is new can’t believe the protocol for treatment it’s very "aggressive “consultant s phrase not mine “ . It seems a daunting journey very scary and lots of hurdles to cross such as fitness for surgery. He passed the pre-op but know chemotherapy will scupper his fitness. 

How did he find the flot ?? How bad was the surgery and was he in long ?? How is his eating now ???

Any answers would be helpful and thanks so much for your time . It seems there are no local support groups for this cancer it feels rare .

Thanks Joules x

Congratulations to you both.

I too was diagnosed last year and finished my post op chemo in June.

Declined the offer to ring the bell at the chemo centre as I didn't want to tempt fate but each to their own.

Been a fair rollercoaster for both you and your husband and wider family, no doubt.

Certainly was for me and mine.

Glad to hear your husband is doing well. Fair to say i'm doing much better than I thought I would be when I first heard the extent of the surgery I wad going to be having.

Russ

Hi

Thank you, that is so encouraging to hear. I'm very pleased to hear that your husband is doing so well.

I have just had a similar diagnosis and I am at the very start of my treatment with chemotherapy yet to start.

I am aware that its a major operation and that the recovery time is long.

I don't really have a feel for what life will be like during my recovery after the operation. 

I am trying to put plans in place now for when I come out of hospital after the operation but I don't really know what I will be able to manage during the first 2 weeks, first month and second month and onward in terms of looking after myself and what I may be able to eat. 

If you wouldn't mind it would be so useful to me if you could share with me you and your husbands experience of recovery after the operation and I would be so grateful for any advice you could give me from both of your experience during recovery. 

My very best wishes to you both. 

Geoff 

Hi Geoff. The eating regime post operation is fairly simple. Eat your normal diet but make sure at least for the first month that it us totally minced up and you chew slowly. The portion size should be less than the size of your fist and you will have say 6 or more  meals per day instead of three. You need to get your head around the fact that you will never return to your preop meal sizes. This sounds restrictive but you will become an expert on working your way round restaurant menus etc to fit your new life.Everybody does things differently of course and what I have said is just an overall rough guide and hence a bit of a generalisation. It's a different life but still a good one. I had my op back in mid 2023. Good luck with it all.

Hi Geoff. Welcome to the forum.

I completed my treatment fairly recently so happy to share my experience.

I think a big part of what you like will be like afterwards and how long recovery takes will depend on your individual circumstances. How fit you are, how old you are, how sick you and how determined your are to get back to your old self.

I was dianosed in October last year and told I needed surgery. My sister put me in touch with someone who had just run a marathon on this 1 year anniversary following surgery for esophageal cancer and his advice to me was to get myself as fit as I can in the time I have before treatment got the better of me.

Given I wasn't suffering any of the obvious issues (eating, swallowing etc) associated with this type of cancer I was able to do just that and I joined the gym and started running. Managed to keep this up to the week before my operation and i believed this helped me massively. There were weeks where I couldn't exercise due to the chemotherapy but I trained pretty hard otherwise.

I'm now 5 months post surgery (23rd Feb was the date of my operation) and feel like i'm somewhere near back to a reasonable level of fitness. I'm 45 years old for context and I walk, run or cycle pretty much evey day.

Fair to say the whole aftermath and impact of the surgery has been so much better than I envisaged. They made it sound so awful and I was absolutely terrified of whay life would be like afterwards. Can imagine your head is in a similar place.

Hopefully I can give youn a bit of reassurance that it's not that bad.

When you first come out of surgery, eating is a bit of a learning curve. Dumping is a problem that you will work your way around. Basically a horrible feeling you get when you eat. For me it makes me feel a bit like i'm going to pass out and sweat buckets out of me. Usually only lasts 20-30 mins then passes. In the days and weeks after surgery, sugary and fatty foods gave me bad dumping and had to be avoided.

5 months on and I still get a bit of dumping, usually caused by eating and drinking too close together or when I eat too much. Got to be carefull when I eat out as it's easy to get carried away and tip myself over the edge.

In terms of my physical fitness. My ribs are still tender where they broke them and opened me up and the scar accords my front is still a bit tender but that about it. If you are having either robotic or minimimally invasive surgery I would expect physical recovery to be much quicker as they dont need to open you up the same or cut through the layers of muscle like they do with open surgery. I'd be pushing for that if its an option. Understand its a bit of a postcode lottery as to whether or not your hospital does robotics.

Worst thing about my recovery has been the sore ribcage and belly arear where they opened me up. Avoiding this will improve your recovery both in the short and long term as my stomach and shoulder muscles will never fully recover. I must have had about 70 staples removed from the two wounds.

Now they've healed up and the eating regime is somewhere near cracked, the only other real problem is getting comfortable when sleeping. Having to sleep propped up absolutely sucks. Dont feel like i've had a comfortable night's sleep since hospital when I was off my nut on painkillers.

Sleep aside, lifes pretty good. My social lifes in the fire a bit because all my mates are drinkers and a big part of our social life revolves round the boozer so i'm having to get my head round that but can't really complain otherwise.

I stupidly signed up for the London marathon shortly after coming out of hospital and at the first time of trying, managed to secure a place so I have just started my training plan for this.

Only started running when I first got my cancer diagnosis so never attempted anything like this before but fairly confident I'm going to be able to do it.  9k currently my biggest distance post surgery so still a long way to go.

In a nutshell, life is going to be different, but not massively, providing the cancer doesn't come back. Eating, drinking and sleeping will never be the same but on a plus side I can eat pretty much whenever I want without putting on weight and no longer spend and arm and a leg in the pub.

Another good piece of advice would be to batch cook food in preparation for when you get out of hospital. You ain't going to want to do much but you need to be getting plenty of good stuff into you.

Good luck with everything. You have any questions whatsoever, just ask.

Russ

Hi Russ

Thank you for taking the trouble to give me so much hopeful and useful information. Its just what I needed to hear. I will take your advice about getting as fit as possible for the operation.

I have been starting to plan my recovery and have optimistically bought an indoor bike trainer (I do a fair bit of cycling normally) and I have a rowing machine as well and so hope to start gentle training when I become fit enough after the operation. Joining the gym is great idea. 

Good luck with your London Marathon training, what an achievement that will be.

My very best wishes

Geoff