Abnormal cells

[GrannySmith]

I had a call in January from the hospital, advising they had found abnormal cells when I had my routine gastroscopy in December. I was diagnosed with Barratt's Oesophagus 8 years ago and this is the first time they have found an abnormality. The said they will rescope in June, and I am booked in for 30th. I am now getting paranoid about what they will find. I think I can feel a strange feeling in my tummy around the area the oesophagus joins the stomach. I'm not sure if I'm imagining it or not. The hospital said not to worry (ha ha!!!), but as the time for the rescope is nearly here I am getting myself really worked up. They said they can't give me anything to calm me down and I will just have the normal sedation, which, to be honest, doesn't kick in until after I get home (I think the adrenaline I produce kills it). Has anyone else been in this position and if so, how did you cope in the run-up to the scope?

[spanner16]

I've not been in your position in terms of the abnormal cells thing - they found my tumour and it was a big shock but I thought I'd compare your experience to when I'm waiting for my CT scan and / or results and I know it's a horribly anxious time but I often find the wait is worse than the results, even if it's not great news then at least you know and can work out a plan from there. In the not knowing period you're filled with hundreds of 'what ifs' and it can be totally consuming. The way I try and think of it is how would I want to spend these days up to my scan, filled with worry about what could be or living it up and enjoying every minute of now before (maybe but hopefully not) my life changes completely? Besides, in your case it could be all be fine! I know it's hard but try and just enjoy these days in blissful ignorance, you'll tie yourself in knots thinking of what could be - try and ignore it all, enjoy everything and deal with whatever comes once you have a definitive answer. Best of luck, I'll be thinking of you! xx

[strangetimes]

How awful for you ,completely understand why you feel anxious .

I know just what you mean about thinking you can feel pain in a certain area ,you sound just like me -)

I'm not sure what to say except that the hospital would undoubtably have had you back earlier if the changes were greater and causing them concern .

If it's any help my symptoms ( and I think quite common ) for the tumour at the junction of my stomach and oesphageous didn't involve pain ,it was choking and regurgitation. Tho having said that ,if you're like me ,your anxiety will have your throat tightening with tension and feeling that you can't swallow !

Everyone is different but I think you have to be fatalistic and think "what will be ,will be " .I know that's not much help ,sorry .

Try and be reassured that they are monitoring you regularly which will ensure that any changes are found early and can be quickly and simply dealt with .

Would it help if you could talk to the doctor /person doing the endoscopy about what would happen ,what the next steps would be if they did find changes ?

Finally ,speak to them about the sedation for the endoscopy . I think it's normal to feel exhausted and spaced out after the procedure but doesn't really indicate that the sedation didn't work at the time . If you're not sufficiently sedated at the time they would know and administer some more . But please do tell them your concerns ,they want you to be comfortable and I'm sure they will be helpful .

[Hidden]

The good thing about being monitored for Barrett's Oesophagus, as you have been doing, is if there is any problem it can be dealt with early. If it is a question of Barrett's Oesophagus developing towards cancer, they might find low or high grade dysplasia, which is the precursor condition. Nowadays this can often be treated with radio frequency ablation which saves the problem of having the major surgery. It is quite normal for them to have a repeat endoscopy, which is what is happening to you now, to check the findings because it is quite a specialist process to identify the changes in the cells.

You are quite right that stress and anxiety can create extra stomach acid and this can lead to to feeling worse.

You do have to clear your system of the other medication before the endoscopy and it is natural to get nervous - a bit like waiting for an exam result.

[twohorserider]

I was in your position about 8 months ago. I had been under surveillance since 1999 when my Barrett's was diagnosed, annual endoscopes, and then in 2012 they found some dysphasia so it was 6 monthly. On my second six monthly in October they told me there was a carcinoma. Quite a blow and. Hard to come to terms with, but I did and as it was at a very early stage I was able to get treatment other than an oesophagotomy.

I never liked the endoscopy but over the years was able to approach it with a slightly calmer disposition! My early ones were without sedation and these were pretty hard to take, but when they increased the number of biopsies I elected for sedation, wish it had from day one. I usually manage to get record blood pressure readings before the procedure, but I do h ave " white coat" syndrome.

So please try to calm enough for them to do the procedure, you will be fine once the sedation kicks in. Ask for a bigger dose.

After the diagnosis the doctor doing the endoscopy said they would remove the oesophagus as this would eliminate the problem completely. I know from reading this forum just how traumatic this can be and as the carcinoma was very small I asked to be referred to UCHL where I knew they used endoscopic techniques. They use quite heavy sedation far more effective than that I had at my local hospital, so insist that they give you as much sedation as they can. I used to be vaguely aware of what was happening but not at UCHL .

Within 3 weeks I had the carcinoma removed via endoscopy. Two months later a small patch of dysphasia and the after another two months ablation to remove the Barrett's .

Another two months and last week another visit showed just a small amount of residual Barrett's so t hat was ablated. Now I wait for three months and then they check if all is well then just go onto surveillance, 3 months then 6 monthly. If there is any Barrett's left then a little more ablation. So hopefully I now have no Barrett's !

A difficult year but not really any bad times, just get fed up of a soft diet for 2/3 weeks after every procedure!

So if you have high dysphasia insist on being referred to a hospital that does ablation. If it is a carcinoma hopefully it will be only in the lining and then insist on having it removed by endoscopy.

I understand from the hospital that the success rate with no reoccurance at 5 years if 95%, they have only got a 5 year record as it is a new procedure.

Good luck with the procedure, breath deeply and think of sunny beaches and nice things, it can help.

[GrannySmith]

Thank you for your comments everyone. It is really good to know I am not alone.

I am trying hard to fill my time until the rescope with lots of good things - outings with family & friends, planning holidays etc. I have already cut down working from 5 days to 3 days a week to ease myself into retirement, which I hope will reduce the long-term stress.

I am fortunate that my husband is very caring and tries to keep me upbeat, but it is difficult to be positive all the time. Although this has been a good week-end, and reading all your comments has made me feel that I need to stop getting so worked-up and wait until I know what the outcome of the scope is.

Thank you all, and I will let you know how I get on next Monday.

[Mikey2711]

Of course you will worry, it is difficult not to, but you are not alone we are all the same.

Deep breathing works for me, ( usually) just try to tackle things one step at a time.

Take care, I will be thinking of you

Mike

[GrannySmith]

Well, I had the follow-up gastroscopy on Monday (sedated) and the consultant said there doesn't appear to be any visible sign of lumps, which she would expect after 6-months if the abnormal cells had increased. However, I still have to wait for the biopsy results (3 to 4 weeks) to have the confirmation one way or the other. I managed to get through the procedure by thinking of all the support I have from you lovely people and my wonderful husband. I'm still feeling battered and bruised down the gullet and am having to eat slowly. I'm just praying the biopsies show no abnormality. Will keep you updated.

[dawann63 in reply to GrannySmith]

I can only imagine how awful this has been for you. I was diagnosed with Barrett's 3 yrs ago and am due for my first routine scan this year. When I had the first scope they also found a GIST in my stomach and I had a another scan after a year; nothing had changed so they said they wouldn't do any more yearly scans for that unless I had any new symptoms. So this time, I shall be worrying about both! I have some hoarseness and crackling in my chest at the moment,and as the doc says its viral not bacterial, so I'm worrying its connected to my Barrett's. Have you ever contacted Macmillan nurses, they list Barrett's on their website and I know how supportive they can be, as I lost my mum to lung cancer. I do hope your results come back ok, thinking of you.

[GrannySmith in reply to dawann63]

I hadn't heard of GIST - just googled it. I hope yours remains stable. I haven't contacted Macmillan, as I thought they only got involved if cancer is detected. I'll look into it, thank you.

I do think the waiting is the worst bit. At least if you know you can start planning. Thanks for your kind thoughts.

[GrannySmith]

Well, I finally have the results from my Gastroscopy. Thankfully, all is well. I still have reactive atypia, but no sign of dysplasia, and consequently "no worrying features". I have to continue with routine Barrett's monitoring, unless, of course, they find something else next time. The relief is immeasurable, and I thank God I can breathe again...for a while at least.

Thank you to all who were supporting me through the wait for the results, it really helped knowing you were out there.