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

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.

Wow Lee, 

What a decision! 
First up though, glad to hear he is doing so well, plodding on and smashing it every day (clapping emoji x100) So good news that he is now operable, BUT , maybe I know exactly what is going through your mind-:

1) go for op and hope for the best

2) Not go for the op , carry on with chemo and hope for the best!

In terms of what I know. There are a few about on here who have never been operable , one is 9 yrs into that 'palliative' treatment and another is 'visable disease free'

As you know my husband had the op and yep it is massive and incredibly complex and tricky. We were also told 10% chance of death on the table or shortly afterwards! Happy stuff or what.He was on the slab (: for 10 hours (keyhole) and ICU for 2 days I think. Recovered pretty well, but had the post op chemo which knocked the stuffing out- and  now has to have this hernia fixed):

I suppose ultimately what does you Dad want?
Questions to consider are things like his general health, does he have any other medical conditions? How does he tolerate chemo? Is he out n about on it or in bed blotto. Will he have to continue with chemo after the op anyway? Consideration to quality v quantity?
I'm sure someone will be along who knows more about it than me, but rest assured whatever decision y'all make we are with you all the way and cheering you on.

Keep the faith Lee

Let us know

Best wishes

Hilts

Hi Hilts, 

Thanks for the reply- my Dad had a stroke 5 years ago (and has made a full recovery) and he also has diabetes (only in the last couple of years). When he had chemotherapy he is generally quite good- has a few days of staying in and resting but mostly ok. The surgeon did say he would have chemotherapy after the OP.

Hi Lee,

That's incredible news Lee but as you say a dilemma. Not sure why the surgeon is saying it's not 'curative treatment'? It seems they don't say that you are 'cured'. I agree with what Hilts has said and it's obviously your dad's choice. You know what happened to my husband and it is a complicated op he was 8 hours in the operation. Part keyhole and open but ended up being opened up again so abdomen is no longer keyhole. 
There are also life changing consequences to the op but my husband felt it was the best option. 
 

Is there anyone from the hospital upper GI Team you could talk to? There maybe someone from here who has had a similar situation but ultimately it's what your dad chooses. It is hard but we are here for you whatever decision is made.

Keeping the faith 

Milly

Hi Milly,  thanks for your reply.  Unfortunately there isn't really a team in place (I get the impression the NHS is really good at offering a team). We don't really get much help or info from anyone except for the oncologist and that's very limited (I think some is due to the language barrier and also its probably not as supportive as the NHS). We were disappointed about the OP not being curative but it's still an improvement to where we were before. 

Thanks 

Lee

Hi Lee,

It's definitely good news overall and being offered the operation isn't something that they do unless they feel it will be of benefit to the patient. They have to tell you the reality because it is such a mahusive operation. Pneumonia is a fairly common complication but they  antibiotics to try and prevent it. As you know my husband was doing fantastically well until a week later when he became critically ill and nearly died. However others on here haven't had any major complications and were home in 8 -10 days. It's not an easy operation for anyone but there are survivors.

There are also some who have lived for several years on palliative treatment. 

keeping the faith

Milly
 

Hi Milly, I just wrote a long reply but lost it, drat.   Have been away all last week for work again, which was good.   Got back to find husband much improved!!  No major crashing after eating!!   What a blimmin relief, I could hardly believe it.   He ate two thick pieces of toast this morning smothered with butter and marmalade.   Even I had indigestion just looking at it.   I was just staring at him in disbelief!!!   I hope Kev's scan goes ok.

[@Hilts]‍ sorry to hear about your husband's hernia,, yes you could really have done without that, but let's hope it goes smoothly as it is a common op unlike the oesophagectomy, and pray it helps with the coughing problems etc.

[@Andi1947]‍ we are all thinking of you and keep on keeping on (huge virtual strength giving hugs)

[@leechap]‍  a hugely tough decision to be made by your Dad.   It's a difficult operation for anyone to go through, and the surgeons have to make sure the odds are known.   As Milly said some people have survived for years after and others on the palliative route have also made years.   He will have your support whatever decision he makes and that is hugely important.

[@bfg]‍ hope all is going ok and [@dooggreg]‍ so good to hear from you.   I also worry about the people that don't post any more.

SallyX

Hi Milly, I just wrote a long reply but lost it, drat.   Have been away all last week for work again, which was good.   Got back to find husband much improved!!  No major crashing after eating!!   What a blimmin relief, I could hardly believe it.   He ate two thick pieces of toast this morning smothered with butter and marmalade.   Even I had indigestion just looking at it.   I was just staring at him in disbelief!!!   I hope Kev's scan goes ok.

[@Hilts]‍ sorry to hear about your husband's hernia,, yes you could really have done without that, but let's hope it goes smoothly as it is a common op unlike the oesophagectomy, and pray it helps with the coughing problems etc.

[@Andi1947]‍ we are all thinking of you and keep on keeping on (huge virtual strength giving hugs)

[@leechap]‍  a hugely tough decision to be made by your Dad.   It's a difficult operation for anyone to go through, and the surgeons have to make sure the odds are known.   As Milly said some people have survived for years after and others on the palliative route have also made years.   He will have your support whatever decision he makes and that is hugely important.

[@bfg]‍ hope all is going ok and [@dooggreg]‍ so good to hear from you.   I also worry about the people that don't post any more.

SallyX

Hi Sally,

So great to hear such good news! That must have  given you both such a huge boost! Thanks for replying  and your good wishes for our meeting. 
 

keeping the faith for everyone 

Milly 

Hi everyone, 

I'm new to this forum. My dad was diagnosed with oesophageal cancer in March 2018 and has had chemo and RT. He was sadly unable to have surgery. He had a stent put in in April this year, but within the last month swallowing has become very difficult with him vomiting after most foods and he's lost weight and the community hospice team are involved. He had a barium swallow done last week which showed 2 areas of narrowing within the stent and they said they might be able to put another stent in to stretch it out or something? Just wondered if anyone in this chat has had a oesophageal stent replaced or re-stretched? If so did it help? 
 

Many thanks, 

Rachel

Hi Rachel,  I am so sorry to hear about your Dad, and know how much you are suffering.   Oesophageal cancer is a horrible difficult cancer to deal with.   I can't give you any advice I'm afraid, but lean on the hospice care team and ask for their support, they are the best people to help you at this time.  If the team think the stent will help then at the end of the day it is your Dad's decision if he wants to try it being replaced, and you can only support him and his decisions as best you can.  
Sally X

Hi Sally, 

Thanks for your message :) 

It is such a horrid cancer, so cruel! I think they are talking about him in MDT meeting tomorrow so will wait to see what they recommend about stents etc. 
 

Many thanks

Rachel x

Hi All,

Sally - I'm doing great :-).  I too have a love of toast, with lashings of butter and marmalade.  My other half looks on in an amazement on accasions.  I would say that my fitness levels are improving - still not up to pre-diagnosis levels, but working on it.  My weight is still stable - has been the same now for nearly 4 months, for which I'm quite pleased with considering my jej tube didn't last before being discharged post-op.  GOG mode still clicks in - but I've ran out of excuses and am putting it down to the fact that I'm probably a grumpy-old-g't anyway.  Hope your hubby is coming out the other side now of FLOT ii - the revenge.

Rachel - sorry, I don't know much about stents other than what they are supposed to do - but I guess like a lot of things there are a number of options/strengths depending on the need.  Hope he is doing ok.

leechap - always a difficult decision, made more difficult by the varying "odds" that get thrown around. Even for those who are given the flot/op/flot "curative" path - the odds that we will die from the disease are 30 - 40%.  The odds of the surgery complications yu have been given are about "normal".  There are odds as well for palliative care.  I guess at the end of the day, it's down to the quality of life that we have left and judging that against what we perceive to how much we have left.

Andi - sending big virtual hugs your way!  

Milli/Hilts - best wishes as ever to you and yours!  Is there a date for the op yet?

Thanks for the reply bfg.

Lee

Hi All,

Well... my husband had the appointment with the Consultant Oncologist yesterday afternoon. The CT scan showed all good - no signs of anything other than surgical changes to his 'plumbing'. Yippee! Also his left lung is now 95% which is brilliant! It was around 75%. after the VATS and decortination in July. So all in all the best news we could hope for! It was exactly a year to the day that he was told the diagnosis after the endoscopy. So we are now looking at travel insurance- so any tips welcome! I hope this gives hope to others. 

Bfg - good to hear you are making progress. It's a very long and bumpy road but knowing others are travelling with you who 'get it' helps somuch. 
 

Rachel I'm sorry I also don't know much about stents but the cancer team should help and I found the Macmillan nurses helpful. I hope they can help him with his swallowing, it's such a horrible disease. 

Everyone I hope you are trucking along and still thinking of those who haven't posted in a while.

keeping the faith for everyone 

Milly

Hi Milly, really good news to hear:happy:

get that holiday booked!

lee

Thanks Lee! I hope you are getting some help with your dad and the options available. 
 

Keeping the faith

Milly

Hi Milly

That is great news indeed, and funnily enough I've been making a couple of casual enquiries too following some other threads on this site, just to see if I was "insurable" so to speak.  

I came across Staysure travel who went into detail on the condition just on the on-line entry and it provided me with a price for an annual policy.  I haven't dared try my wifes yet - it'll probably explode.

Let me know how you get on with it - as I'm quite keen to start travelling again soon.  Hilts may have some expertise too following her and hubbys travels.  :-)

cheers

bfg