Had my video consultation this morning and surgeon is proposing open surgery with 2/3 oesophagus removed as well as liver surgery. He's painted an extremely bleak picture about recovery and how my quality of life is going to be affected plus the likelihood of it returning. To say we're upset is an understatement going from, there's hope to well not much and is it worth it!  Can anyone out there reassure us that it is possible to have a decent quality of life, please or any other advice.

Hi Gerrie,

Sorry to hear your consultation didn't go as you were hoping- we don't really have any experience of surgery as my Dad was told his is inoperable as he is stage 4 and started to spread to lymph nodes. 

I think other's on this forum will be able to advise you better. 

If you're feeling down, take a step back back and look how well you've done over the last 3 years, there's plenty of hope you can do even better over the next 3 years whether that's down the route of surgery or not.

Lee

Hi Tabnabs

It's a lot of information to take in one go, and you will have been through a lot over the last 3 years since the original diagnosis.

There are so many factors when faced with this, and it's so very much a personal choice on how you progress.

My understanding is that from the initial diagnosis - only about 30% of people are offered a curative path via the chemo regime FLOT, followed by surgery, and then another round of FLOT.  Even with this there are chances of recurrence or further spread, but the alternative is palliative care and others will take a great comfort from you having gone through this successfully over the past 3 years.

The fact that you have been offered surgery as a way forward on this rollercoaster of a journey is not something I believe is offered lightly.

There are some in this little group who are over a year post op, 6 months post op - 2 of us (including myself) are 3 1/2 months post op - and others more recent.  I believe that most of us have had part of the oesopagus removed, probably part of the stomach - and then everything joined up.

It wasn't easy - but 2 1/2 months post op, I was much improved.  Then obviously FLOT knocks you back - but I'm looking forward to that wearing off in a few weeks time.

Go back to what the surgeon said to you after a bit of time to reflect and make sure the questions you want to ask are written down, however trivial sounding. 

The recovery post op is challenging and there are so many factors on how general health and fitness levels can affect the speed at which you start to feel back to a point which is manageable,

Yes - things are different with me now (I'm almost down to my target weight before all this stuff kicked off - it's an extreme way of doing it and I wouldn't recommend it), but I'm actually ok with a different regime in eating that should improve as time goes on.  There are others in this group here who are an inspiration to me (4 pts of beer and Pizza - you know who you are!), so a good/decent/potentially excellent quality of life is achievable.

So just be aware that a) We are here, b) We have been through it/are going through it/will be going through it, c) Everything you are told and will no doubt find out online looks bleak - but then so are the potential side affects of ibuprofen (not that I'm comparing the 2 - just that you have to be told all of the potential downsides as well as the alternatives in order to come to an informed decision).

So fire away with questions!  The one thing I will say is that you will get honest answers wherever we can.

Cheers

bfg

p.s. Love the cat.  Dignified, sophisticated - so I've changed my avatar to our cat.

Hi any thanks to those how've replied, it means so much to me that I'm not alone! Yes, it certainly has been a rollercoaster and I've shed more tears than you can imagine, but have tried to be optimistic throughout. Now it's a case of thinking long and hard.

p.s. Cat is Teddy, sealpoint siamese, our other two are Tonkinese. Love your cat Bfg!

Hi Gerrie,

I can only agree with the previous comments. We also had the 'pep talk'. As I've said before my husband's situation is a bit unusual and his journey is still bumpy with 3 hospital visits this week! 
 

There are success stories and you are one of those who has done remarkably well although I appreciate it can't have been easy. To have surgery or not is a big decision and as suggested you can talk it through with the specialist team. They have been brilliant and we have had a specialist nurse visit us at home too.

We are here for you whatever you decide.

Keeping the faith 

Milly 

Hi 

Tabnabs- look how far you have come. I totally second what BFG has written. I am not the most 'diplomatic' writer at time and he has put it rather better i think (:

The Medics always give you all the 'senario's' good , bad and downright ugly (:

Many on here have been in your position and if you are operated on like BFG says most/ all/ top of stomach is whipped out. Another poster on here Doug- is a year post op and pretty much there. My guy is 6 month post op and 2 ish months since last 'delicious' chemo.

There is no way they would even offer you surgery unless you were suitable, so go and have a 'pint' or 4 - no only joking and digest what you have been told.

Ask away- none of us on here are medics just. Fellow travellers 'living the dream'

best wishes

Hilts

OMG - Millie you will be not happy with me- I FORGOT for the first time ever ever . Always keeping the faith x

PS- like the cat. We bought our cat about 6 yrs ago from a litter on gumtree for £30, she was six months old.  Over the ensuing 6 months she 'turned' from a short hair grey thing, into a massive cat, with huge eat tuft, beard/ruff a tail like a feather duster, back legs like car wash brushes.  We don't know the paternity, but the mother was an average white with patches moggy.  Most people and us defo think she is one of those 'forest cats', most likely Norwegian. , not fluffy and big enough for Maine coon. Must be some randy Tom cat who broke loose in the district (:

Hi Hilts,

Not sure what you meant by I forgot unless you forgot about the C word if so I'm very pleased! 

Unfortunately, Kev still has a pleural effusion so came home with antibiotics. They said he could stay in but they and we felt being home would be more beneficial. 
He has since had a severe rash reaction to the antibiotics so more blood tests etc. It has looked a bit better today you can actually see some white on his leg and it's no longer purple looking and as sore.  More red so hoping it goes. 
 

Respiratory clinic today. CT Scan to be booked to determine if they can try and drain again! Different antibiotics so hoping he tolerates those. He is allergic to penicillin so it's more limited but there are more these days. All this has resulted from the second emergency op. The consultant even came down to see him on Tuesday - he and the surgical team have  been brilliant.

Re eating he's doing pretty well overall not quite pizza and 4 pints lol. On Fortysips as well. It's the muscle wastage after 5 weeks in hospital and not being able to do much because he gets out of breath. 
 

Anyhow he's home and it's going to be a longer road but at least he's on the road! 
 

Keeping the faith

Milly
 

Hi Millie, 

I meant, for the first time in for a long time, I didn't sign off with 'keeping the faith'. It has almost become our 'handle' - remember the old CB radio. A lucky charm if you like, and I was miffed with myself for not doing it.

I am glad your man is home. No doubt good for his soul - pizza and burgers etc took mine about 10 weeks post op to achieve, beer - 4 pints about 4 weeks ago, so plenty of time for Kev. He has done 3 'rounds' with the surgeons and WILL get there. Seems that most take a year to recover properly. Despite my husband doing okay, he still gets v v tired & grumpy........ grrr and coughing.

Yes, husband and now I have noticed the muscle wastage, he legs were not chunky before, but they are now sticks and his butt has halved in size, bless him. I think when the body is lower on calorie input the metabolism scoffs the muscle.

Fortsips mmmmmm- you think with all the advances in medicine they would have up with something like mohito or IPA flavour.):

so

Always keeping the faith

HILTS

You are all so amazing, my hat off to you all, such bravery and determination. 
Our oldest daughter's wedding reception is in August and our son's graduation in July, so lots to look forward to and to give me the impetus to get through this next chapter.

best wishes to everyone 

Gerrie