High Grade Dysplasia

We are interested in finding out people's experiences who have had Barrett's Oesophagus and then been been diagnosed with high grade dysplasia. We understand that some people are referred for radio frequency ablation, or even surgery; whilst others go into active surveillance. It may depend on which hospital treats you.

We would like to collect a number of case studies, with the possibility of using them, if appropriate in a newspaper / medical journal article.

If you are interested, I would be pleased to hear from you. My email is [e-mail]

[cobaltgal]

my husband had high grade dysplasia Barretts esophagus, they removed his esophagus and stretched his stomach up to his throat. he is doing well post op 17 months, he will never be the same, , he is very thin and has a hard time gaining weight and when he does its hard for him to keep the weight on. He has been through a lot and it took a long time before he started to taste and like his food, his eating has totally changed, things he liked before he does not like now, he actually eats a lot of fruit, and less bread which is great. It is well worth the surgery, who knows if he would not have had it done what would have happened. Life is Great!!!!

[Hidden in reply to cobaltgal]

I think that is the issue isn't it. It could have been a lot worse without the surgery, and it does take time for the body's digestive system to adjust to the new arrangements. Weight is not the same as health though, and there is a lot less of him than there used to be from the sound of it.

[lilliput]

Just to day that I'm interested in this thread. I have Barretts, no dysphasia I would want ablation if it progressed,even if the next scope showed high grade dysphasia. I'm assuming that if it didn't work the Ivor Lewis surgery could be done as a next step. To me the quality of life /risk balance would fall on the side of ablation ie more quality but greater risk.Sorry double post

[Hidden]

I have removed the duplicate post - and you are quite right about surgery being the final option, but it would not necessarily be the Ivor Lewis procedure. There can be endoscopic mucosal resection that simply removes a small area of a surface tumour, without removing part of the oesophagus, and indeed the whole operation can now be done laparoscopically ie keyhole surgery.

Outcomes when the surgery is done at this very early stage are dramatically better than when cancer is found at, say, Stage 3, with 5-year survival rates being nearly as high as for breast cancer, at 85%+.

The presence of dysplasia is something that does increase the risk of cancer developing. Low grade dysplasia carries about 5% risk in the following 1 - 8 years; high grade dysplasia 50% in the following 1 - 8 years. Hence the importance of monitoring periodically.

[cobaltgal]

my husband is finally gaining weight , he has to watch himself cause it doesn't take a lot for him to lose it...if he eats too much he feels ill and has to go lay down...he often gets these cold sweats and I believe it has something to do with his sugar , he starts to sweat real bad and usually he eats something sweet and it fixes the problem faster...all in all I think he's doing great considering what he's been through...his eating habits have changed, small portions and if he eats too much then he feels ill...I think we are very lucky cause it could have ended up a lot worse...thank you all the doctors and medical staff that took such good care of him...

[Hidden]

It is nice to gain weight, and we tend to associate it with recovery, but often people settle down at a new normal weight, and if they try to eat more to put on weight, their digestive system punishes them. So it is sometimes best to ignore the scales and think of it as a wardrobe problem (as long as one is not consistently losing weight, and is taking in sufficient nutrition).

It does sound like classic dumping syndrome (there is information here: opa.org.uk/pages/factsheets... )

Yes, eating something sweet does restore the sugar:insulin balance, but these insulin spikes can deteriorate to the point where they can become dangerous (whilst driving, for instance) so it is a good idea to review the diet generally, steer clear of food with added sugar or with anything ending is -ose, and go for low Glycemic Index food as if you were a diabetic. Some people use insulin level meters to monitor how their bodies change before and after eating.

Christmas is not the easiest time when eating is not easy!