Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Thanks Tracy. I think you're right. 

The verdict is in. T3 N0 M0. Strangely, this terrible news came as a relief. Which is crazy! The plan is in place for chemotherapy & surgery. It's moved incredibly fast to be honest.

There's 250 miles between where I live and parentals. I'm just back home after dropping everything the day after his diagnosis, to go up there. It seems a little ridiculous now but it made me feel much better. It sounds super cheesy but being able to help him choose a good waxed flat cap for when/if he loses his hair was poignant moment. 

I think I read on a post here, you have to except the diagnosis but the prognosis is negotiable (or words to that effect). I rather like that.

Thanks all for your kind words of guidance & understanding. 

L

Hi

Hilts

yes I did find out pretty quick that google is not a friend in this scenario.  You be dead before your first scan if you took any notice of it.  My Husband is T2, N2,  M0.  Never really heard much about this type of cancer and brill he was diagnosed. Can't believe how many people actually have it and the age of people, 

Its a harsh world 

tracy

Hi y'all

Tracy & Lizzie- night owls ;worry or box sets?? (:

Big hand clapping emojis for you both NO M's and as for N2 , well they will soon be smashed into oblivion (: 

So no spread for either of you. The vast majority on here are the same.

Being as common as the rest of us, the treatment plans will probably be similar FLOT chemo x4 , surgery, FLOT chemox4 .

Ours moved incredibly fast. From THAT endoscopy to starting chemo= 5 weeks and in that time all the scans etc and we went on holiday! What else do you do eh (:

Lizzie- it is really strange, but as I said, once you get the verdict in and know where you are going with treatment, I kinda gets a bit 'better' - the plan is some kind of route map. I don't know why it makes it better- but for me it did. The new cap will certainly come in handy! The hair will go, I was seriously in envy of husbands legs!! But it will come back before you know it. 
Tracy- yep, I thought we were rare breeds at diagnosis, but clearly we are as common as muck(: there are LOADS of us all similar ages and that is just on here. When husband had his chemo and op, he travelled through treatment with 4 other blokes, husband being the oldest at 56 !!!. They spent hours comparing and contrasting side effects, war wounds etc. They are still in touch now! Your staging is not terrible news, of course you'd rather not be in this position, BUT , that staging is actually quite good. It is amazing how bad news can also be good- if that makes sense ?

Both - You will have billions of questions- ask away, we are all on here 'experts in the lived experience' (: Read through our past posts to capture the 'highlights' of the last year or so.

Keep the faith

Hilts 

Hi y'all, 

Well the verdict is in . CT Scan on Wednesday. Call from MDT nurses. Scan been 1 reported, but needs another. NO SIGN of any reoccurrence. Nothing dodgy yaaay.

However ( always one eh) he has something called aspiration.  We kinda knew that was going on, but surgeon ringing on Monday to discuss what to do. It will involve a barium swallow to see what is going where, then plans going forward.  So good.

Anyone out there had this? I might post on a new board.

Anyhows  off now

keep the faith y 'all

Hilts 

Great news it's nothing dodgy Hilts !

Wish him well from us and enjoy the weekend now !!

Hey Hilts that sounds great news it's nothing dodgy!!   What a relief.   The aspiration thing sounds hopeful there is a solution for it at least a plan to do something about it.   Did you mention that the hay fever tablets(?) seem to help?   SallyX 

Hi Hilts,

So pleased nothing 'dodgy' was found. As Sally said they can do something which is a relief.  Like you did back home and where do I go first? Here of course lol.

We had a great week in the Lakes. Scan this Wednesday and then appointment with Oncologist the following week. So everything crossed. 

keeping the faith

Milly

Hi Sally,
I was thinking of you and your husband on Wednesday. Hoping the eating is getting a bit better. My husband had a couple of 'crashes' last week but not full blown sweating etc but 'the runs' not a normal topic of conversation which is why this group is so good!

keeping the faith

Milly

Hi Tracy and Lizzy,

Welcome to the club no one wants to be in! However this group have helped me so much during a really difficult year. You may have read my posts but in brief my husband was diagnosed at the end of last October 2020. Active and healthy 62 year old. Problem with swallowing then bam I'm sitting in the dark in a car park whilst he has endoscopy and get a phone call to go on. Shock news given by specialist  nurse. Lots of scans, tests and this took longer than most on here. If you want to read our journey it's on my previous posts but he did have unusual complications which was very traumatic. However he has now had his last FLOT x 4. We have been away with family which has been wonderful. As you will see my husband has a routine scan on Wednesday he was T3 N1? MO But after op T2 N0 M0. actual op couldn't have gone better.
After scan we have meeting with Oncologist next week so we've got everything crossed.

I too googled it to the point of exhaustion and it's just such a scary cancer - not than any cancer isn't scary but it is aggressive but as you will see on here people do live with it and some have done for a long time. Others have had surgery and are doing well. It is a difficult road but knowing others are alongside you is a huge help. My husband has a mentor who was a friend of a friend. He was 49 year old policeman when diagnosed in October 2018. He was told he would never be able to do his job again. But he was back 6 months after the op (no chemo after surgery  radio/chemo beforehand) and back doing shifts after 9 months. He's just climbed 3 Yorkshire peaks for cancer. 
 

There is hope.

So keeping the faith, as always Hilts, for everyone 

Milly
 

Still in ICU - on life support - got pneumonia - fingers crossed I make it

Still in ICU - on life support - got pneumonia - fingers crossed I make it

Good luck Andi, stay strong,  thinking about you. 

Lee

Hi Andi - sending you the hugest best wishes and I have more than my fingers crossed.

Bfg

Hi Andi,

We've all been thinking of you. Fight as hard as you can . My husband was ventilated after internal bleeding then he had pneumonia. ICU are highly trained . He made it and you will too. Sending huge hugs and positive thoughts. 
 

keeping the faith

Milly x

Hi Andi

wow , just read your post from yesrerday , hang i there i know pneumonia is scary had it when i was a teen , i am sure you know everyone on this thread will be sending you positive vibes for easier days ahead , every day is one day nearer to home , take care and keep posting.

regards

Douglas

Hi y'all.

Well, the verdict is in on CT scan. Surgeon phoned yesterday.

Good news is that there is no evidence anywhere of recurrence yay

But- always 1 or 2.

What is causing all the trouble is - trans hiatial (sic) hernia. So stuff that should be lower down is poking through - erg. Apparently it is a known 'side effect', particularly for keyhole , up to 25% about 10% for open. So food not travelling through into the small bowel as 'efficiently' as it should and then backs up, hence cough. Surgeon said, a small amount of small bowel poking up is okay, but husband has way too much.

So, needs more surgery. Pulling stuff back down and fixing the hernia. We are really pleased about that - NOT. But, this in reality is actually good news!!! No reoccurrence and a problem that CAN be fixed, but doesn't feel like that at the mo ):

Anyone out there know anything about said repair??
 

Andi- keep trucking on. Sticky lungs are pretty common post op. No doubt they are filling you full of oxygen and antibiotics (:

Keep the faith - trying too

Hilts

Hi Hilts, really good news about no recurrence...good to hear.

I guess as you've said, minor complications are to be expected and in the big picture,  you'll take that!

Good luck

Lee 

Hi Hilts 

Strangely enough  about  15  years ago i had a hiatic hernia repair done by keyhole surgery in and out the same day with less than a week down time ,  i think it was a glued  on mesh patch  a bit like a  bicycle tyre inner tube repair i was told , a mere bagatelle as they say compared to what we have already had , i still wonder about those who no longer post and hope they are all ok , anyway take it easy and keep up the good work.

Regards

Douglas

Hi Hilts

I still find it odd that there is a distinct lack of follow up scanning / monitoring for us, so any excuse for a CT scan to confirm there is no evidence of recurrance is definitely a yay!!!

Good old google provides the gory details on the trans hernia side, and all things considering - it looks like a proverbial breeze.  As long as it doesn't affect the beer capacity side of things - I'm sure hubby will be happy!

Still thinking of you Andi!  I'm sending huge virtual hugs your way which is probably just as well as I've accidently cracked bones and caused one woman to faint with real huge hugs....

Cheers

bfg

Hi Hilts,

Good news there is no reoccurrence and they've found the reason for the cough and it's fixable. Another op isn't what your husband wants but it sounds like standard procedure and hopefully it will cure the cough! 

Kev has a CT scan tomorrow so I'm getting scanxiety - will be glad when we've seen the Consultant Oncologist next week. Fingers and everything crossed.

Andi - thinking of you and sending positive vibes.

Redski I hope your FLOT is manageable.

Sally hope your husband is doing OK.

Lee - hope your dad is chugging along.

Bfg yes it is at odds with what you'd expect regarding follow ups.

Doug like you and I guess everyone on here we do think of those who aren't posting and hope they are all OK.

Keeping the faith for everyone 

Milly

Hi everyone - I want to update everyone on the changing situation of my Dad.

One year ago my Dad was diagnosed with inoperable stage 4 oesophageal cancer after having trouble swallowing (living here in Spain). The oncologist said there was a big tumour at the bottom og his oesophagus and it had spread to local and distant lymph nodes. The oncologist told us that chemotherapy was the best option with the idea to extend life rather than to cure (estimated survival time without chemo 3-6 months, 1-2 years with chemo). My Dad started chemo in Oct 21 and experienced the side effects like most people, we managed them and he was doing OK when in Feb 21 he got covid and then phumonia and spent 4 days in ICU. After feeling really poorly he made a good fecovery (still having effects of long covid but getting less and less). 

After a couple of scans showing no growth of the tumour or spreading, we were very happy and my Dad was also on a clinical trial for immunatherapy. After the first cycle my Dad had a gap but the foolowing scan showed slight increase in the volume of the lymph nodes (and Dad started to struggle swallowing again) so the oncologist decided to stop the clinical trial of immunatherapy (even though it may of been a placebo) and get back on to a different antiogenic chemotherpy formula. 

The following scans shown a slight decrease in the volume of the tymph nodes (we were very happy with this). The most recent CT scan shown again a slight reduction in volume in the lymph nodes so the oncologist decided to send my Dad to another hospital to have a more thorough PET scan. The results of this scan (3/4 weeks ago) shown the Tumour to be the same size but a further reduction in the local lymph nodes but the distant lymph nodes are now showing not to be cancerous! This was obviously great news but this is where it get complecated and into unknown territory!

During the meeting with the oncologist, he said this was unusual behaviour from a stage 4 oesophegus cancer patient and against the 'norm'. He then went onto say that surgery would be very difficult but it could now be an option - he would speak to the surgeon.

We then had a meeting with the surgeon (2 weeks ago) and the surgeon explained the operation was on offer to us but it would be very difficult. He said it could last 8 hrs and the idea is to cut a large part of my Dad's oesopagus and connect it to either the stomach or colon. He said that no patients had died whilst having the surgery but 10% have died soon after with complications and 40/50 % have complications post surgery (phunomia, leaking etc).

The other major piece of news the surgeon said, was that this operation wasn't to cut out the cancer from my Dad but was to helmp with the symptons of the disease - it woul slow down the cancer and improve the swallowing etc. He said that in his experience my Dad would be looking at 2-3 years survival if the operation goes well but stressed it was a very complicated operation.

Our first thoughts was that it was fantastic news that we are now in a position to even consider surgery but after being told that it was a curative operation it made us dissapointed. 

Our meeting with the surgeon is this Monday and we have to give a decision of whether to take the operation or not and if we don't, my Dad will be back on chemotherapy from the following week. We have been trying to find other people who have experienced being in this position (being offered the op but not as a curable op but only to relieve symtons and extend life by 2/3 yrs) but have not managed to come across anyone yet.

Any thoughts, advice, suggestions (I know it's incredibly difficult) would be greatly appreciated.

Thanks,

Lee.