Together we will beat cancer

Donate

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