Hi,

Ive just been directed onto this thread, not even sure I'm posting correctly ‍♀️
anyhoo, I was diagnosed with stage 4 oesophageal cancer in 2018, mts to lymph and liver (4), told I'd probably have 5 months no treatment, 11 months with, fast forward 2 years and 7 months later I'm still here. Various lines of chemo later, my latest scan CT and MRI have shown that there are now only two mets in the liver, one 11mm and the other 10mm, nothing in the oesophagus or lymph nodes. So from being definitely not operable they are now offering surgery. I have a zoom consultation with the Prof on Wednesday so will find out exactly what's on the table as it were! was 56 years old female when first diagnosed, non smoker and didn't drink, only symptom was food getting a bit stuck! 
ive read all the threads to this and must say I'm pretty trepidatious about the surgery but as it is potentially a game changer, I'm not going to refuse it.

Hi Tabnabs,

This is such an inspirational post and thank you for sharing your story with us all. Regarding  surgery everyone is unique so there are lots of different experiences. My husbands actual surgery couldn't have gone better what happened a week later was just plain unlucky. The hospital has done a review as it's never happened in 20 years of doing the operation. However they saved him and he is now home.

I hope your consultation goes well and it's great that you've joined this thread. A real boost for Lee and his dad too.

Keeping the faith

Milly

Thanks, sending best wishes to your husband and you of course!

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- not a good day for you- this roller coaster has some pretty nasty twists

HOWEVER- I would say , I might be speaking out of turn here, but that is pretty much what our MDT/Surgeon told us. He added that there is also a 5-10% chance of popping off on the table!!! Just thought we should know! We were also told in no uncertain terms that the goal was curative BUT, there were no guarantees. So that was a great day.....

Now my husband is 6 months post op. Yes , it has been tough and yes, he has had to accept he has to eat less- he right doesn't stop him though. He is back at work and we are planning a few trips .

So my advice - let it soak in a bit, then phone the specialist nurse to talk it through. Trust me when I say the would not even offer surgery if you were not in a good enough state, you've had a load of treatment that had made you now a canidate for surgery.

Hope this makes some sort of sense (:

check out my posts from the start if you like , to see how things rollercoaster around.

Best wishes

Hilts
 

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 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