Oesophageal Patients Association
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New diagnosis

Hi all,just been told i have cancer of the oesophagus and naturally very con cerned.

Any posts from other patients will be appreciated

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Don't panic, and don't google it.

those are the words i was wisely given and of course i ignored both, i googled it and then panicked because the stats are out of date as soon as they are published.

best advice i can give, prepare for the worse and hope for the best.

I was diagnosed in Feb 2016, rushed into CT scans MRIs etc which that in itself can panic you but its what the NHS does best. gather as much information as possible so they can give you the most accurate diagnosis and you surgical/oncology team and devise the best route of treatment. in my case it was hit it hard to give me the best chance of recovery. T3 means it had gone into the muscle of the esophagus, and in my case a lot of the stomach too. chances are it could already have spread but 9 wks of chem it shrank. removal of all my stomach (diet plan sorted) and some of esophagus plus 50 lymph nodes (thankfully all clear) and to make sure i got 5 wks of radiotherapy combined with more chemo. it was a bad year! but here i am, back at work full time, walking dog, doing up my house. yes i still get tired but i made it. positive attitude (not always easy), sick sense of human (my coping mechanism) and being open and honest with my friends and family, but mostly myself, asking for help when i needed it.

the worst part, waiting for those results as there is nothing you can plan to do until then. no matter what your diagnosis, once you have it there will be a plan. a course of action you can take (or not) but until then you are just floating with no direction. so find something to do to take your mind of the waiting.

I wish you well and i really am hoping its a positive outcome for you, something you can deal with.

Keep on this forum, to vent, to ask questions anything. there is usually someone here to help.

Zantri

xx

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Apart from the shock of the diagnosis and all the anxiety that this entails, the issue coming up will be the TNM staging, which is explained here:

cancerresearchuk.org/about-...

The outcomes for cancer diagnosed at the earlier stages are really very good. But it is an anxious time waiting until the Multi Disciplinary Team have discussed your case and the best treatment to offer.

The other thing I might suggest is not to be in a hurry to tell other people about it. Their reactions do vary in helpfulness, to out it mildly. But you will find sources of strength from unexpected quarters to help you through.

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Hi Tommy

I know how you feel as I received the same diagnosis 12 years and I was extremely worried. But I agree with Zantri try not to panic and don,t Google . You don't say if your cancer is operable or not and your future treatment will depend on the staging and location of your Tumour, when you have that information you can move forward in a more positive way.

Phil

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Hi phil iam told that it is operable after chemo. I have had 1 endoscopy,1 ct scan and a pet/ct scan so far with another endoscopy on monday. They will decide next week what happens next. My problem at mo is that i cannot drink water or eat food -well very little anyway as it wont go down

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That's really good news that they will operate, although that will also be difficult, but it means there is a good chance they can remove it all.

eating can be very difficult, i found the chemo helped after a while and it started to shrink but depending on where yours is you may or may not benefit from the shrinkage. have you seen a dietitian? they can prescribe fortitude drinks which are revolting but high in nutrients and calories. try little but often and whatever works for you. I found pasta in sauces good and yogurt. but at some point the chemo may make you nauseous, i am hoping not, the smell of cooked food put me off so i had to cook it quickly, order in or friends used to bring food round.

Try and build yourself before chemo, luckily i had plenty of 'resources' thats what one doctor told me, in other words i was a chunky monkey, middle age spread etc. you cannot say that now, Kate Moss would be envious of my figure, I have literally lost half my body weight so please try and build up as you will need it. Dietitian will help.

Zantri,

xx

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Hi Tommy that is excellent news because a large percentage of patients are not given that option. The chemo should start to shrink the tumour very quickly and allow you to eat and drink more comfortably.

If you wasn't to talk don't hesitate to contact me on the private chat and I will give you my number

best wishes phil

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Hi Tommy .. sounds just like My Tony and most people at this stage ,,,very scary , and we know it seems an endless wait and you’ll find that from now on it seems all you think eat and sleep is flipping CANCER! The best advice is we were told Chemo surgery then Chemo ! We an absolute mindfield at the time and a long haul but be guided by the Consultant

Take one step at a time and keep strong ...you’ll get there.

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Good advice from Zantri, read all the leaflets from the OPA as well as the marvellous CD "What can I eat now". As you no longer have much of a choice, go for it and make the best of life. Keep a positive attitude, it is surprising how quickly time goes and how much your body will adjust to the changes. The Ivor Lewis procedure is now over 70 years old and has saved the lives of thousands. Good luck.

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Hi Tommy, I had exactly the same problem with eating etc, same scans and had my op to remove it on 2nd July after 2 sessions of chemo, you sound to be in a good place, put up with the chemo if they suggest it, I'm now a few weeks from my op, very slowly recovering, but they have given me the all clear that it was fully removed !

OK eating is a new way of life, small portions and frequently for me, yes I'm tired more often but hey, I'm here with my family.

The chemo shrunk the tumor and whilst recovering my strength for the op I was back eating with very few problems.

As the others say, keep a positive attitude, take all the tests, and whatever they suggest, go with it and look to an outcome where you can have more years of life ahead of you.

The other thing is get as fit as you can before the op, it will make a difference to your recovery, I bought a trike and cycled to get fit, I'm not a sporty person but was able to have good lung function and although I had lost over 3 stone I did improve my fitness which I am sure helped my recovery.

it's a journey with some hills but worth any discomfort you may experience.

jeffw663

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Thankyou jeff for an inspiring post. I am not going to give up! I spoke to my dr earlier and he thinks i have a blockage where the oesophagus has narrowed. He said the endoscopy on monday will clear it if it doesnt clear before. (He does endoscopys as well!) I should start chemo soon.

Regards

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Hi Tommy, trying not to think the worst is easily said, everyone said the same thing to me?

I am now three years down the line after been diagnosed with stage 3 esophageal cancer and I basically had NO chemo.

I'm saying no chemo as they had to stop transfusing after a week, unfortunately is was not for me.

So, taking into consideration stage three cancer and no chemo after three years now, I am back to work............so you see, there is hope but you must remain positive.

It wont be a walk in the park as we all react different after surgery but after surgery treat your body as if you were caring for it! be kind to yourself if this makes any sense.

Good luck.

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Hello Tommy,

This is serious business but don't get scared, Keep calm. There are many different treatment options available. Try to get food into your system as best as you can. Maybe some of these liquid nutritional drinks would help. Ask your Doc what he recommends.

Biggest thing for me was to improve my state of health prior to surgery. I was diagnosed in May of 2017, stage 4, with metastasis to the liver. Had 8 chemo sessions with a Folfox regimin and herceptin. This shrunk my main tumor, and seemed to kill off my liver tumor. I then went in for an Ivor lewis, got the top of my stomach together with 2/3 of my esophagus removed (tumor and all). Spent 10 days in recovery then went home. Complete recovery was long. I've been getting used to a new digestive system, eating more times a day (but at lower volume) and sleeping propped up.

Try to keep a positive spin on things. This can be beaten, you have to be a fighter and take things one at a time. A sense of humor helps.

The thing that helped me while waiting for results and treatment plan was to take my oncologists advice and work on getting myself into better physical shape for whatever was to come. for me this men't daily trips to the gym and as much walking as I could handle. I felt better and it no doubt helped with tolerating the chemo and surgery better.

Hang in there until you get more info so you can plan an attack. You are not alone, there's a lot of us out there who have gone thru this.

Wishing You the Best

Al Nowosielski

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Good luck Tommy. There are lots of survivor stories on this site (my husband is 7 years post-diagnosis, now 83 and really active). Recovery from the Ivor Lewis takes time and you will feel low sometimes but by and by things get better.

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Hi tommy if you look on the OPA website there are some good options to the fortisip drinks that you can make that taste much nicer. Just make sure with the sugar tax they haven’t changed things to sweeteners. Slim fast drinks with full cream added work well too. I found on chemo I couldn’t do the fortisip they were just too yuk and made me very sick as did the smell of food. But 8 years on I’m on a yacht in Sardinia enjoying the sun and local cuisine. Good luck Lizzy

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Hi Tommy ! Firstly we’re so very sorry to hear this but rest assured you have come to the BEST place for help assurance and advice and support along what will seem like one hell of a ride !! Best advice is keep POSITIVE and hopefully your already a fit guy and speaking from caring for a hubby who’s one year post op on 24th !!! It Does get better ...albeit differently...any questions don’t hesitate..good luck x

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The Fitter you are ( and fatter !!!) good excuse to pig out once you’re able and you will once Chemo shrinks that B..... tumour !! The more able the fight !!

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The worst part is the waiting but the advise to stay positive and get yourself as fit as possible is a good start. Most things in this journey are unpredictable, given a chance of an operation and possible a few more years , what had I got to loose. I'm now into my 25yr along this road something that seemed impossible at the time. So travel with hope it really has been worth it. Best wishes sally

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Six months since my laparoscopic/thoracotomy (removal of oesophagus and top 1/3rd of stomach) I had a total body scan 10 days ago, got the result yesterday - all clear. Not a cure yet but well on the way. There is a lot of light at the end of the tunnel, I have not been given chemotherapy as I have a blood clotting condition and no radium therapy either. So don't give up, the past six months have gone so quickly, keep reading up on the subject try to stay as fit as possible and don't worry about weight loss. Good luck for the future. If you want to ask me any questions please feel free.

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Tommy,

Everyone's case and story will be different. I was diagnosed in January and had my surgery in May. I only had one session of chemo. I was due to have three prior to surgery, but I am one of the rare 1/100 people who's body doesn't tolerate it. As such I ended up ill in hospital for a month, but that's just my story. As I say I had my surgery on May 22nd and I went back to work on August 1st. I don't have many issues and I'm now eating anything I want (more or less), but just slightly smaller amounts. The surgery team removed a third of my stomach, two thirds of my oesophagus and 43 lymph nodes. They tell me that under usual circumstances they would have given me another session of post op chemo, but after my previous reaction they have decided not to do so unless absolutely necessary. They tell me that as of this moment I am cancer free. They won't commit themselves long-term term, but that's understandable I suppose. None of us get a guarantee. I'm doing fine for now and intend to keep doing so as long as I can.

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