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,

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, it's great to hear you story- there's so many bad stories with this cancer and especially stage 4 (as my Dad has), that it's really refreshing to hear your story. Was it just chemotherapy that you've had- I've heard of people having better success with immunotherapy?

You've cheered me up with that news...I'm going straight to share your news with my Dad 

Lee

Oh my oh my.

My suspicions seem to be coming true. We are breeding faster than rabbits!
i have been 'off ' for a week or so and I come back and there a more of us again LOL (:

Welcome to Pascha - you are now a member of the oesophageal club and Tabnabs- seem you have been a member for a while- but what an inspirational member you are, talk about an amazing turn around and state of affairs. How did you find us?
Seems that even when things seem 'hopeless' they are evidently not. So Leechaps, there you have it. Told you there a few 'stage4's about didn't I (:
 

As most of you probably know I am an ex nurse, left in about 1990. Most cancers back then really were not good news at all, not that they are great fun these days,chemo was pretty basic and radio similar. Surgery was the only 'fair crack' option and now as we know cancers cells are way to 'clever' for that sometimes. I have been told that cockroaches can survive  a nuclear meltdown- well, that puts cockroaches in the same ball park as cancer cells in my opinion(: It truly is amazing how far we have come. As I always say to my mate at work who lost her mum about 15 yrs ago to ovarian- to be where we are now is thanx to all those who have gone before. She finds it rather 'comforting' to know that her Mum's is part of a legacy that improves year on year.

Anyway- enough of the smaltz. (:

Hope everyone is sweating their pants off in the tropical heat (: . My husband (the victim) has been swimming in the river most of the day with the kids. Now got a reasonable tan , which makes him look really well again, got rid of that chemo pastyness.

Update on his 'progress' -initial part of the 'add aspirin' trial over, sees oncologist on Wednesday to see progress and take up the 5 yr aspirin (fingers x) or the placebo ):. Sees surgeon on Thursday to discuss the 'cough' to decide where to go with it. In saying that though it had massively improved doubling the dose of omeprazole to 80. So maybe he won't need a scope?? Nothing surprises me on this rollercoaster any more......
 

We all have seemingly been pretty quiet lately . I've lost count how many of us there are now!! in this Oesophageal club, but so glad we are all together through the good and the bad.

Going to 'top up' my (ginger, non existent) tan,

Always keeping the faith

Hilts

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

Hi Lee,

I had chemo first year, second year was targeted therapy and last round was FOLFIRI.

Please tell your Dad that there is always hope, that's what my consultant told me at the beginning and my wonderful sister in law, who is a Pastor said "you can accept the diagnosis but you don't have to accept the prognosis "  and that's what I've always hung on to! 
Gerrie

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!