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 

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 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

Hi Hilts,

I didn't notice that yes it's our 'handle' rubber duck we got a convoy! Lol.

Your husband swimming in the North Sea made me smile. Many happy hours as kids at Sutty. I remember sitting in those folding aluminium deck chairs and letting the sea come in around us - such simple fun! Oh to see the sea. I've been to the seaside every year at least once and often lots more than once since I was born in 1962.

Keeping the faith

Milly

Hi Gerrie,

How wonderful that you have two special events to look forward too. Focus on those too. A nice distraction - better than pressure washing the patio!
 

Keeping the faith

Milly

Tabnabs - So sorry you've had what sounds like very scary news. I'm right at the start of the journey but I'm thinking of you and I hope that the next steps go smoothly and you come out the other side with the best possible quality of life that can be hoped for. 

Personal update - So I'm off to spend a few nights in a London hospital next week for a PET scan and "an exploratory procedure". Looking forward to whatever new superpowers the radioactivity gives me anyway ;) I wish good luck to the medical team trying to keep me still for an hour in the scanner... 

Hi Milly,  good to hear he is home.

Lee

LOL Jae in Kent WTH is an 'exploratory Procedure' I hope they didn't try and sell it on those terms LOL,

made me smile after a hot day at work. Sounds like the laparoscopy thingy they do ,to have a look at your abdominal lymph's, See what they are up to and yep PET scan- your 'radiant glow' will not of course be due to a snazzy suntan (only joking, you just have to stay away from other beings for 4:hours). I think most of the victims on here will have had both. Pretty standard part of the diagnostic process. You usually then get a meeting with the team, within 2 weeks to give you the verdict and treatment plan- no pressure / stress like (:. From where I sit and I think husband now on reflection feels the same, this whole diagnostics part is the most 'stressful' and freak out part. Don't get me wrong, we would all like to be doing other things, but once you have a plan, you can have something quantitative in your hand to aim for.

Kids out garden with pump action.... water pistols- husband out 'supervising' I'm not sure why he would need 2 guns and the hose pipe for that?? ....... I'll stay out of it.

Catnabs- great that you have some cracking life events to go to. Hopefully,plenty of pints involved. You'll probably get just a 'tiny' bit 'emotional'. Given all that you 've been through let rip..... let us all know how they went and we would like to know if you'll be doing any 'Dad dancing'

Millie- "breaker 1-9, do you copy" pig pen it's the rubber duck- looks like we've got ourselves a convoy" Watched , just 1-2 times LOL, love it, particularly when the 'Jesus bus' joins and they " crash the gate, doing 98, let them truckers roll" I could go on, but I will spare you (: My uncle was well into CB RADIO in the 70's particularly enjoying 'tuning' into channels he shouldn't (: keep that secret LOL!!!!!

As ever y'all keeping the faith

Hilts x
 

Gosh - what a difference being away from the chat for 2 days.

Tabnabs - Love the oriental breeds.  Despite his relaxed look - our's is a burmese.  Great to hear about things to look forward too, and it looks like you've found a great home like all of us to rant and rally against everything, but also to provide great news with your story.  :-)

Hilts - what can I say, but your posts are great fun to read.  I too have the skinnier legs and other parts of the body - I've lost 4 inches on the waist (not that's a bad thing) - but it's more noticable on my face apparantly.  My weight has stabalised over the past 6 weeks - despite the chemo- even though it does drop 5-6 pounds with each cycle, before going back up.  

Milly - looks like a plan for your hubby.  It should start to settle soon.  For what it's worth - my breathing was also problematic for a while.  Just walking about the house made me breathless for longer than I expected.  The effusion won't help obviously, but mine has improved - albeit very slowly and even since starting the 2nd lot of FLOT, there is still steady and noticable improvement to the point where I can now breath in fully without getting into a coughing fit.

Jaeinkent - Yep - as Hilts said.  Its PET followed by laperoscopy.  I called it the dotting the i's and crossing the t's part of the initial CT scan, to ensure there are no blockers for the FLOT/OP/FLOT.  Its probably the most challenging part of the journey - but once through it, then you will know what the "plan" of attack is going to be.

[@Pascha2021]‍  - we are here for you.

Leechap - hope your dad is doing better now and that Tabnabs story has provided inspiration

Forgive me if I've forgotten anybody else.

Regarding myself - I've got the picc line coming out this afternoon and after a week and a half of what my missus calls my GOG phase (grumpy old git), I should be in a position to start a bit more of a celebration for getting through the final lot of FLOT!

Keeping the faith as ever, and the skinnier body.

cheers

bfg

Hilts/BFG, Yeap you both called it right. A staging laproscopy it seems though my follow up meeting is booked for Wednesday and they claim that'll be where I hear about treatment which sounds a lot quicker than you got. Fingers crossed anyway as my husband is currently in such a mood due to lack of information I am walking on eggshells!

Turns out I'm getting my own room whilst I'm up in London. Not sure whether they've accidentally got me down as private... ;)

My birthday today but I'm feeling so uncomfortable with stomach problems I've taken to the duvet. What a party animal! 

Happy Birthday JaeInKent

It's a nervous time and all the information currently is based on what ifs - and the team you are working with will be doing their best to get that information to you and your husband. I had my plan detailed within a couple of hours post laproscopy. My surgeon at the time advised that I would know straight after I woke up and true to his word,  one of my overriding memories of the day was a huge up just as I was coming around.