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osophagus cancer diagnosis

1 Nov 2020 15:24

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

osophagus cancer diagnosis

2 Nov 2020 21:37 in response to RayB

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.

osophagus cancer diagnosis

3 Nov 2020 13:16 in response to dooggreg

Hi RayB and doogreg, 

good to link up with you both.

doogreg, got your response on my other thread- I'm no tech gal, so sometimes get hopelessly lost among the posts.
Anyway, Doogreg, your info is incredibly useful and positive. Most of the general net is a horror story, so it is really good to have the perspective of a real post op patient.


we had our op date today, brought forward a week to the 10th December. Much better than the 17th!!. We have young kids for whom Xmas is still all sparkles n magic, so to have him in hospital over Xmas would really have been a nightmare ( not that this whole thing is any fun).

i am with you on the praise for NHs- omg, they have been so quick n slick over this whole thing. 
rayb- husband was only diagnosed on 29 th July- totally unexpected, his only symptoms was occasionally food clogging- but his loving nagging wife (me) forced him to the gp and the rest has been an utter rollercoaster. Appointments coming out of our ears in the first couple of weeks, so much and too much info, but that settled and he was on chemo within 5 weeks from diagnosis.

He's just completed the 4 pre op FLOT- nuclear stuff, but bravely borne. Symptoms gone after 2 cycles.

Now op on 10 th. I've told him it is chicken fortisip for his Xmas dinner while we eat the turkey , something for him to work towards after his op

Doogreg- did you have to post op FLOT?

rayb- keep in touch.

both- the emotional side of things is another beast all by itselfwow. My best 'treatment' for that was and is keeping things as normal as possible.. we are even back to squabbling whose turn it is to take the bins out

best wishes.

osophagus cancer diagnosis

3 Nov 2020 13:24 in response to Hilts

Ps- sorry I am a bit of a chatterbox.......

IS it just me or is this cancer on the rise??. When he was going for chemo over at the unit- there was 3 blokes, him being one, he being the oldest at 56!!!, the others 47 & 44. All blokes, all with varying stage 2/3 oesophageal. All with hardly any symptoms. Generally fit and well blokes.

it might be that the unit do all their oesophageals on a Friday, but including you guys that is 5 of you all in similar situations in a short period of time- interesting I thought.

osophagus cancer diagnosis

3 Nov 2020 15:03 in response to Hilts

hi again

good to hear from you i found drinking asda milk shakes a good substitute for solids by the time your husband gets home he will have had some solid food although its a bit trial and error over quantities the first couple of weeks and this is the period where you experience most of the weight loss , don,t worry if he is sick or has a lack of appetite this is all part of the healing process as i said milk shakes or just milk will get you through , you may also have a feeding pump connected which i did not enjoy using but that bis only for about 8-10 weeks , on the subject post op FLOT it optional for me  as i had such good surgical and pathology results  , the reason i declined was i had lost 18kg although i was a bit overweight pre op  , my chemo buddy has had the follow on FLOT he is now 70kg and i am 73kg i was 91kg when i started FLOT and he was about the same so don,t be overly concerned about weight loss if you , keep positive , ask questions , be informed you both will be fine , any questions you have i am always here to help and god bless.

osophagus cancer diagnosis

3 Nov 2020 18:17 in response to dooggreg

Nice one doogreg, 

urg - the thought of those overnight feeds):, with that revolting 'vanilla' flavour feed that repeats on you - ex nurse memories. You'd think with all the advances in medicine, they could have made it into something more appetising  like mojito or ipa flavour

So far, he has kept all 95 kgs of his weight, he is 6 4 tall.  So a bit of spread around the middle. When he was clogging with food, to get it passed what turned out to be a   tumour ,he was guzzling everything with large amounts of olive oil, cheese melted in everything and get this little invention of ours -Frozen lollies of Rhoda's cream - you know, the stuff that is like butter. He also is and always has ,guzzled milk.

Aldi is out closest supermarket, so they do milkshakes, belive it or not we don't have a local Asda.

we have just been out for tea and he worked his way through a huge suet game pudding , followed by a huge bit of bread n butter pudding covered in Rhoda's, makes me feel sick just thinking about it.. Before the 2nd chemo there would have been no way he'd get that down, he is very pleased with himself and since finishing the chemo he says it is the best bit of food he has managed to taste in months
Anyway , off now for a simple cup of good old tea.

osophagus cancer diagnosis

3 Nov 2020 18:27 in response to RayB

Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

osophagus cancer diagnosis

3 Nov 2020 20:59 in response to Cancerstolemymum

Hi,

Thank you all very much for replying to my first post ,this has been a whirlwind for me and the wife with appointments galore and we have teenagers so in a bit of a similar situation , I have had my Hickman line inserted today ,and seems a strange thing to say but can`t wait for the chemo to start, probably will regret saying that lol, how did you mange keeping the line dry during bathing ?

 

osophagus cancer diagnosis

3 Nov 2020 21:55 in response to RayB

Greetings Ray B.

welcome to the oesophageal club, no doubt one you'd rather not be in .

What is your staging?

in answer to you question about keeping the line dry. Husband has a PICC. If I remember rightly a Hickman is up near the collar bone. My solution for his PICC was a black bin bag or carrier bag stuck on with gaffer tape!!! Most attractive.(:. I suppose if it is on you're collar bone, just a bit of plastic of any description stuck over it. Your hospital may have some special gadget though.

yep, we couldn't wait to crack on. Now, just finished the first FLOT x4. Nuclear stuff, but honestly after the 2 nd one was eating normally again. Amazing really. 
His pretty much followed a pattern- bit sick feeling on the day, and the day after, but once the steroids were stopped on day 3, felt like he said like the worst hangover in history- what worked for him was just sleeping it off, by day 7, back to normal-ish. He also described it as Groundhog Day!!
surgery booked for 10th December- so fast we haven't had time to dwell on it.

best wishes

osophagus cancer diagnosis

4 Nov 2020 15:17 in response to Cancerstolemymum

hi,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

osophagus cancer diagnosis

4 Nov 2020 15:19 in response to Cancerstolemymum

thank you and god bless you and your family

 

osophagus cancer diagnosis

4 Nov 2020 15:29 in response to RayB

Hi Ray

your nurse should be able to sort you out a large see through stick on dressing i used them on my feed tube and showered no problem , you will be fine on the FLOT although on the treatment days you will be hungry due to the steroids a good tip is to take a stock of sugar free sweets with you and milk shakes , good luck and be patient.

 

osophagus cancer diagnosis

4 Nov 2020 16:40 in response to Cancerstolemymum

Hi

 

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

 

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

osophagus cancer diagnosis

4 Nov 2020 19:59 in response to sisterp

Oh that is such an awful state of affairs.

mind you , it could have panned out much worse for us.

Husband went to GP in the March with minor swallow probs and reflux , was put on omeprazole. After a month no improvement whatsoever. It was me that had to be the pain in forcing him to go back- lots of , how do I put this politely- persuasion- he would have been quite happy swilling the gaviscon. I think it was because of my ex nursing background, that something just didn't sit right.At that point the GP referred straight for an endoscopy and the rest as they say is history, and boy oh boy fast as lightning once the endoscopy came up as dodgy, 5 weeks until chemo started.

i suppose I am quite the pain in the ar*e , but this time I am so glad I was.

take care.

 

osophagus cancer diagnosis

4 Nov 2020 20:20 in response to dooggreg

Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

osophagus cancer diagnosis

4 Nov 2020 20:21 in response to sisterp

So sorry for your loss. Absolutely hideous disease. Xxx

osophagus cancer diagnosis

4 Nov 2020 20:48 in response to Cancerstolemymum

Hi .

i did not receive post op FlOT as my tumour was downgraded to a T1 after the pathology and the initial chemo had destroyed the tumour and it was contained in an area less than 3cm i was however given the option but having lost 18kg and the excellent results  posts op  it was agreed it was not really beneficial , i cant fault my treatment and everyone is different , its all about what stage you are diagnosed at , i see my oncologist every month and i am in a very good place now , a bit early to say i am cured but all the feedback says yes , you take care of you and your family and god bless you all.

 

osophagus cancer diagnosis

4 Nov 2020 21:18 in response to dooggreg

Best thoughts to those who are bereaved. What can one say. No words can be said that would make it any less painful.

it seems to me that with this cancer there is a very very fine line between curative and palliative. More so than with any others ( I may well be wrong here) and it doesn't take a lot for it to tip over into palliative. In saying that though there is a very brave and stoic chap on here who is 7 years + into a stage 4 diagnosis.

 That was one of the first questions I asked the team. Told them- no flannel please, tells us what we are dealing with- and they did.

doogreg- yours was an amazing response- down a whole stage from FLOT and that is incredibly positive.

i am told, now it maybe urban legend, that only about 40% complete FLOT because it is so aggressive?

i have to say 'cancer took my mum' we are not having the same experience with the hospital. Yours sounds awful, with lots of gaps in the treatment. How on earth can they not follow up on such a major operation- what were your mam's staging etc pre op. How much were you told. We have been told quite clearly, that the plan is curative BUT there are absolutely no guarantees. The nurse said " it only takes ONE rouge cell to upset the apple cart.

so while we are optimistic, I think we are also reluctantly of course realistic.

osophagus cancer diagnosis

5 Nov 2020 11:41 in response to Hilts

Hi Hilts

 thanks for your comments as i said previously its all about the early diagnosis and the diagnosed staging as to the chances of containment , unfortunately i have met to many people who were already in  a metastasis situation which puts the risk of the cells spreading elsewhere much greater , my heart goes out to them as that is a different thing to deal with , only surgery and pathology can reveal the true situation , from what you have told me so far sounds positive if i can help you in any way with advice on anything connected with your husbands treatment please message me , take care and stay strong both of you.

osophagus cancer diagnosis

5 Nov 2020 18:13 in response to dooggreg

Hi Everyone,

 

This is horrible thing to have, my staging is stage T3 N2 hopefully the FLOT treatment will have the desired effect, to give me a chance to have an operation and followed by more FLOT,

 All you can do is keep positive, keep as fit as possible eat as much as possible (obviously heathy lol) and hope for the best.

osophagus cancer diagnosis

5 Nov 2020 18:56 in response to RayB

Hi Ray

Thats good   tumour less than 3cm no metastasis and only 2 lymph nodes i am sure you will get through the chemo and onto the operation no problem fingers crossed , keep in touch during your chemo and let us know how it is going , remember don,t be afraid to ask about anything you are concerned about , take care.

osophagus cancer diagnosis

5 Nov 2020 19:29 in response to dooggreg

Hi Dooggreg

Thank you for your support, yes I will update this thread, and keep you up to date with my journey through this process.

osophagus cancer diagnosis

19 Dec 2020 14:54 in response to RayB

Hi folks, 

How are our oesophageals doing out there.

posting my  update.

Husband finished his FLOT chemo toward mid November, with a 'partial response' whatever that is ‍♀️.

Had his Oesophagectomy on Wednesday 16th. All keyhole. 8 hours on the table.

Now he is  on day 3 of something called an 'enhanced recovery programme' when I turned up about 3 hours ago, he was sat in the chair, drinking coffee!!!!!. So was the guy next to him!

Drains and drips in place, but he is walking around the ward!!
I was shocked, in a pleasant way, by how quickly they push the recovery- they expect to Chuck them out on day 7. He is exhausted, but asking for a paper etc.

Don't know the pathology stuff yet, but really not as bad as I was expecting

How are you all out there ?

 

osophagus cancer diagnosis

19 Dec 2020 15:59 in response to RayB

Just saying hello and that I hope your treatment goes well (I am sorry I dont know what FLOT is) my husband has oesophageal stage IV, T3/4, N1, M1 (lung) he cannot be operated on, and is on EOX week one, doing ok so far. I have spent all week in tears as I am so scared by it all but he is being really brave so I need to man up for his sake! There is so much support and information here, it really helps. 

I want to wish you a happy and healthy Christmas and a better new year. Sending positive vibes for all of you x

 

osophagus cancer diagnosis

19 Dec 2020 18:33 in response to Daisy71

Howdee.

welcome to the oesophageal club- no doubt one you'd rather not be in (:

How did your man present, how long was the trouble, how old is he.

if you read back through mine ,the ********* began on 29 th July, officially given 8th august. I think I have experienced every emotion under the sun, sometimes all in the same day.

tThis board is good, where you can spill in 'private'

FLOT- that left me scratching my head, but found out that it is 4 chemo drugs given at each sesh. Every 4 weeks. Nuclear stuff I am told, it has a taxane and platinum.

We are now through the first lot of chemo, and now the surgery, maybe there will be more chemo. They are going for curative intent, but we are under no illusions how 'clever' cancer cells are):

Dont know other regimes, there are loads of them.

There are a few stage 4 people on here, hopefully they might find our little thread.

It seems there are a lot of us 'oesophageals' about, the guy my husband went through chemo with, is now in the next bed to him, he is only 44! Mine is 56!!

maybe it is because I am mega tuned into everything oesophageal, but it seems to be very much on the increase.

best wishes

 

osophagus cancer diagnosis

19 Dec 2020 20:31 in response to Hilts

Thanks. He had hiccups when eating in September, endoscopy mid October, diagnosed mid November. He is 63, we have been married 23 years and have two boys aged 17 and 22. Its surreal. 
 

wishing your husband all the best for his surgery

osophagus cancer diagnosis

21 Dec 2020 13:23 in response to Hilts

Hi Hilts

it,s good to hear your husband has had his operation , i am now six months post operative and 90%

recovered , the pathology does take around four  weeks which usually coincides with your first follow up, if yo have any other questions feel free to ask , i am always happy to help, otherwise have a merry christmas 

Regards

Douglas

osophagus cancer diagnosis

22 Dec 2020 21:18 in response to dooggreg

Hi , 

thanx for coming back.

yep, he's all done and dusted. I could not belive how slick the whole affair has been. When I worked on the wards (okay, it was 1989!,), the op was horrendous and recovery pretty gruesome and lengthy. Not like the 'modern' job in any way. He is day 6 today and all he has left is the chest drain , or the bucket as most of the chaps in his ward call it. He is eating purée now and we have had the pep talk from dietician. All the pain stuff has gone too and he is on oral (jet) meds. All the  4 'wounds' are tiny no more than say an inch, and glued not stitched. Honestly it looks exactly like my gall bladder op. Impressive stuff.

He is utterly exhausted- hospitals are noisy and as I tell him , his body has taken an enormous nuclear hit.

Really hoping to have him home for Xmas, so he can enjoy purée turkey, with a side of pigs in blankets.....purée. He can then have a wonderful nightcap of Jej feed (:

i wonder is there any way to get all the Oesophageals on a single board, I see lots of random single posts on here and thought it might be useful if we are all together. I suppose the downside of that would be if people were in a bad way, listening to positive banter would be really off, and vice versa, if you are in a good place, sad stories would not what one would want to hear..... just a thought.

Have you had much/any of that Dumping syndrome? He is flapping about that , I keep telling him trial , error and maybe never, and he will only know how to avoid it from getting used to his new guts,but just wondering how common it is?

 

osophagus cancer diagnosis

23 Dec 2020 07:23 in response to Hilts

hi again Hilts

in response the first 3 months at home can be a trying with with the appetite , hungry , not hungry , the feeding supplements help a bit although the bind of being hooked up to the pump is irritating and a good incentive to get your eating in check, yes the "dumping" due to over eating is a problem but you soon learn no matter how delicious the food is you need to limit the amount you eat at one sitting , after 6 months i have more or less got this under control , i have a cooked breakfast every day , soup or sandwich for lunch and main course at 4 or 5 pm  snacks inbetween and toast at suppertime , and that is maintaining my energy levels and weight , the biggest surprise is probably how you can adjust to eating probably half what i did previously , eating is not a race or a competition so eat slowly ! , and rest rest , rest , their has been some serious internal re plumbing done and it needs time to heal ! , as before any questions you have i am here to help where i can, have a good christmas

Regards 

Douglas

osophagus cancer diagnosis

23 Dec 2020 07:55 in response to Hilts

Really glad his surgery went well, and wishing you a good Christmas x