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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