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Scrumtasticjojo
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Quote Scrumtasticjojo Replybullet Topic: Oesophagectomy
    Posted: 25 Jan 2017 at 5:15pm
Hi Everyone,

Can anyone on the forum tell me if they've had an oesphagectomy? either recent or a while back and hope they've coped since having it done.

Many thanks

Jo
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jcombs99
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Quote jcombs99 Replybullet Posted: 26 Jan 2017 at 1:23am
There's a Website (google) 4 that I'm sure Chris will put it up . Hopefully they can do a Partial Oesphagectomy (Resection in US they remove JUST 8cm) and not a Total Oesphagectomy ..The less they remove the more normal stomach and life you will have .

CHEERs

Edited by jcombs99 - 26 Jan 2017 at 4:28am
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chrisrob
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Quote chrisrob Replybullet Posted: 26 Jan 2017 at 10:11am
Hi Jo,

Only just seen this and just read your other posting on the Newbie thread.

I am so sorry you are going through this. On the positive side it has been found early and your chances of recovery are good. I know a few people who have had the oesophagectomy and are managing a reasonably normal life.

David Scane is a member of our Barrett's Bath group who had his oesophagectomy just over 3 years ago. You may read his story here.

Another cancer survivor I used to meet at AAH meetings in London had his operation 12 years previously and cycled 16,000 miles a year (about 50 miles a day - which put my, then, 30 miles a day cycling to shame).

I don't know if you know of the Oesophageal Patients Association (OPA) "Patients helping Patients" with whom we work. (OPA and BOC, which BW was then a part of, set up AAH a few years ago.) They have a helpline you may ring with any concerns. They also have an online forum on Health Unlocked where you'll find others who may advise.

The minimally invasive Ivor Lewis surgery you are to undergo was "invented" by Jamie Kelly at Southampton. He provided an excellent talk about the technique at the BW annual meeting in 2014. I also met a patient of his colleague, Jim Byrne (who performed my Collis-Nissen operation earlier that same year) when we were examined by students about to undertake their surgical exams. He had had the minimal surgery and had the five small puncture wounds on his abdomen typical of a fundoplication (which heal quickly and become almost invisible) and another over his right shoulder blade. He said he was back to his former self.

Every best wish to you for the surgery and a full recovery cancer free.

Chris
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chrisrob
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Quote chrisrob Replybullet Posted: 26 Jan 2017 at 10:59am
Coincidentally, an oesophagectomy recipient I have followed via his blogs, posted an update last night.
He had a rough time of it, his oesophageal cancer not having been found until his cancer was a T3.
He initially had a rough time of it but it's now 4 years since his life saving operation.
You may read his latest blog here:

Four years and counting.
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Scrumtasticjojo
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Quote Scrumtasticjojo Replybullet Posted: 27 Jan 2017 at 8:35am
Hi Chris 
 Thank you I had a read through David Scane and the blog - what inspirational people and make me realise there is light at the end of this tunnel. 

Chris my consultant/surgeon qualified at Southampton in 1992 and mentioned he's done over 100 of these. The youngest person he performed the surgery on was a 19 year old girl who is now living a normal life and can look forward to her future.  It was just that he was so matter of fact about it - like its just a normal thing that needs to be done. I suppose I don't and have a shorten life or try and eradicate it from my body completely.

I think for me its the fear of the unknown I to have started a blog called Jo's Philoesophageal Journey on blogger.  It helps me with my feels and thoughts and also helps get the message out there.

I am worried about post surgery - I feel I am going in there (albeit with the cancer) feeling well to then come out incapacitated and in pain.  I believe it's definitely more the psychological effects that its going to have on me.  I have quite a few questions which need to be answered at my next pre-op assessment on the 10th.

I did look up the statistics (i know a bad move) and found that they weren't very high post surgery, which just alarmed me even more - but then I don't know the in's and outs of each individual case.

Jo
x



Edited by Scrumtasticjojo - 27 Jan 2017 at 8:37am
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jcombs99
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Quote jcombs99 Replybullet Posted: 27 Jan 2017 at 6:19pm
          He's a very lucky man to be alive and I would like to see his medical and EGD history before finding Cancer. When did Lewis 'Invent' it I was offered it in Oct 2008 .

Edited by jcombs99 - 27 Jan 2017 at 6:22pm
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chrisrob
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Quote chrisrob Replybullet Posted: 28 Jan 2017 at 9:02am
Hi Jo,

It's easy to scare yourself with the statistics but for most people identified with the cancer, it's too late. For them the prognosis is typically just 6 weeks and there's a very low survival rate.

However, your has been detected early and you will come through this OK.

I don't know if you've been following the BBC Media Show's Steve Hewlett's story? Unfortunately he was diagnosed late - with T4 oesophageal cancer.
There's a post about it here.
He's been providing a cancer diary of his progress in the Guardian. His latest blog is here.

However, as I said previously, his wasn't found until T4 and yours has been detected early so don't scare yourself. Although, of course, that's easier said than done and everyone's entitled to feel apprehensive at the prospect of major surgery. We're all routing for you and sure you'll be fine.
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jcombs99
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Quote jcombs99 Replybullet Posted: 29 Jan 2017 at 6:43pm
Jo
      I would take a look @ ur diet after and try some of what ur can eat before .Some things don't agree with me no matter how good it is for U.
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GrahamB
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Quote GrahamB Replybullet Posted: 06 Feb 2017 at 1:30pm
Jo

My father in law was discharged following an oesophagectomy last Friday. Had a week in ICU followed by another five days on the ward.

He is a pretty fit 74 year old but the op is fairly intense so its definitely not a "take two asprin and stay in bed" type of thing.

He is, of course, very early in his recovery but is already supplementing his direct feeding with some oral soft foods. He is tired, sore and bored but is doing the rights things (most of the time) and beginning the adjustment to post surgery life.

The immeadiate post surgery phase was a pretty traumatic and emotional time for all involved but asking the right questions (and writing down the answers) helped my wife and mother in law a lot.

One particularily surprising bit (though I suppose it shouldn't be considering) is the dramatic drop in care levels between ICU and the ward. We learnt quite quickly that you have to make a noise to get things seen to in a timely manner once you hit general population. Even in a pretty good, specialist ward staff numbers are under pressure and continuity of care can be an issue if you don't push hard enough.

To avoid foucussing on all the possible negativity one quick tale for you. While on the ward my FiL was next to a guy who had come in for some corrective work on his oesophagectomy - that he had 12 years previously to resect his OAC.....

I'll try and remember to update as his recovery progresses. Next big step is making the decision (clinical and emotional) on post op chemo.

G
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Scrumtasticjojo
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Quote Scrumtasticjojo Replybullet Posted: 09 Feb 2017 at 8:28pm
Graham

Thanks for your reply- its sounds like your father-in-law is coping remarkably well from his procedure.  There are many concerns I have but hoping to get a few of my queries answered at my pre-op assessment tomorrow. I'm hoping that once they have removed everything they have managed to capture all my cancer with it and then I can then start to  look forward to living my life again -albeit some what adapted.  With regards to the chemo had it already spread to his lymph nodes and did he to have those removed from his chest?

I wish your father-in-law well for the remainder of his recovery.


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