Hi Scuppy. Welcome to the forum.

Apart from the nurses (who work UK office hours) no one here is medically qualified, and that includes me; I am not a doctor. We're mostly cancer patients and their carers, but anyone is welcome to join.

I really can understand your worries about your husband's health, but Barrett's with High Grade Dysplasia is not cancer. Yes, it is a pre-cancerous condition and therefore needs to treated fairly soon, but unless you've not told us everything, there is every reason to hope that the treatment will fix the problem.  I don't know where you got the idea that 5 years is the average life expectancy after HGD diagnosis. 

You are now in the position where something unpleasant has been found, and you're hoping that there is no more bad news along the way.  I was in this situation 8 years ago when I was diagnosed with prostate cancer, so I know what it's like to worry, hope, fear, and Google into the early hours of the morning. i dare say many of the members of this forum have been in the same position. We all know the agony of waiting for test results. 

I can't stop you from worrying, but I think you're over-reacting. First off, stop Googling. It's a mistake we all make, and in retrospect I think we all agree that it simply increased our fears and worries, and we learned nothing useful anyway. If you must Google, then avoid US web sites, particularly US hospital web sites, because many are cynically designed to frighten people into choosing that hospital for their treatment, all paid for by health insurance. 

Secondly, go with the flow.  There is always a cycle of tests, results, more tests, more results, and maybe round a few more times until the situation becomes clear and a treatment plan decided. If you're new to it then it's frightening, but we're here to offer support along the way.  

Thirdly, try to keep calm. A few of us have found some meditation videos on YouTube useful. I particularly like Meditation in a Moment, because it gives a quick fix in just 2 minutes. There are, however, longer ones if you have the time. I also suggest you discuss what's happening and how it's affecting you with your GP.  You're not being selfish. 

That's probably enough from me.  Remember it's not cancer until it's been definitely diagnosed as cancer! Until then it's just a bothersome condition. 

Please keep us all posted with your news.  

Thank you for your kind words, I will definately keep you posted.  I have only read on Cancer Research website and worry about his weight loss and anemia which they never got to the bottom of.  It is just so difficult to remain calm and positive.

I hope very much to have a clearer picture soon with talks starting Tuesday.  We are fortunate enough to have private medical Insurance which has brought it forward a week.  Hopefully we won't have to wait quite so long for other tests too.  This is not to take away from the great NHS however, we have oaid it for so long we shoudl take advantage of it now we meed it.

Wishing everyone well.

Hi Scuppy

If you have the insurance then use it!  

Although I must say I've nothing but praise for the way the NHS has treated me recently. Barely a month ago I went to my doctor with a persistent sore throat. She referred me on the 2 week cancer pathway and I was seen 2 days later (in the week before Xmas), I had an MRI scan between Xmas and new year. The scan showed an overgrowth of tonsil tissue at the back of my tongue, but nothing sinister. Still, to make sure just yesterday I had a panendoscopy of the throat under general anaesthetic, and I'm now sat at home recovering and typing this message.  Fortunately, the surgeon could see nothing nasty, and if the biopsies are clear then this will turn out to be a false alarm. This has all been done in 4 weeks, with the Xmas/New year break in between. 

That is fabulous service from our NHS.

I wish you all the best with results.  Waiting is the real nightmare for me.  My husband has CT scan on Friday and are hoping they can dismiss everything else and concentrate and get the re-scope and deal with the Dysplasia.  Fingers crossed.

Take care

We saw consultant yesterday.  He felt confident looking at the images of last endoscopy in Dec, that he could resect using EMR.  They would take biopies again at the time and we hope they won't have changed any further.  Monitoring closely going forward.

He had not paid much attention to his notes on weight loss, anaemia or now hoarse voice (very worrying).  With this in mind we now have CT scan Friday.I pray this is clear and we can concentrate on sorting the Dysplasia.

Best of luck to all awaiting any results, it's so hard to put it to the backof your mind!

Hi Scuppy,

Sorry I missed your original post - Telemando's advice is sound (as always). HGD does not equate to a cancer diagnosis (stage zero or pre-cancerous) but is still a worrying and unpleasant condition. The stats for Stage 1 are given on the CRUK website as "Around 40 out of 100 people (40%) live for 5 years or more if the cancer is only in the oesophagus." I'm not a doctor but logically the stats for stage 1 will be worse than for stage 0. 

Please don't pay too much attention to the doom and gloom stats about Oesophageal cancer, wherever they are sourced. Easy for me to say I know but last year I was at a cancer stats conference when time and again learned professors and other speakers warned of the risk of applying stats to an individual case in order to gain some sort of prognosis.

There are several reasons for this, the main ones being that the stats are for all age groups, (you're more likely to survive the younger you are diagnosed), they ignore co-morbidities (you're more likely to survive if you don't have cancer plus another serious condition) and they don't take into account your general levels of fitness (you're more likely to cope better with surgery, chemo and/or radiotherapy if you are otherwise fit and healthy). 

Even when you do get a formal prognosis, these are based on averages and none of us are average. My own case is a good example - diagnosed in late 2013 with stage 4 cancer of the oesophagus (spread to distant lymph nodes and other organs). 

My prognosis wasn't great either - between 2 months and 18 months ... two years at the outside if my chemo was unusually effective. I'm now two years past my best case prognosis and still living life to the full. I was incredibly lucky I know, but sometimes these prognoses are wildly innacurate.

Good luck with the CT scan results and the treatment plan!

Best wishes

Dave

Lovely to hear some positivity and very well done you and your care team - keep living it to the full!

Good luck! :-)

Had the results from EMR procedure and the biopsies were good.  Not invasive disease, still showing high and low grade dysplaysia only.  Waiting for date for Radio Frequency Ablation for the rest of Barretts.  They say 3-6 months as the site needs to heal.  All crossed and hopefull.

Weddings are all steam ahead, and hoping for respite from appointments.  Although still a small bowl procedure  (swallow camera to take pictures) to take place to tackle anaemia.  On the plus side too, weight seems to be stable.

Wishing everyone positive outcomes  : ) and stay strong!