Hi guys,I am in a bit of a panic. I am 11 years post Ivor Lewis, been doing OK really, but I have always had problems with digestion, diarrhea. I've been on Creon for as long as I can remember which has been working well. Just recently the creon aren't working so well without taking Loperamide, the pains I get in my upper abdomen can be excruciating, I get bloated also. I have spoken to the " team " about this , as I am still under them because of my problems. At this point I best say, I am Bi Polar. My concern is pancreatic cancer, I am almost convinced I have it, or maybe pancreatitis. Every time I mention this they just brush over it. An aunty of ours constantly goes on about her friends who have died with this and its freaking me out, my Bi polar is working overtime. I know I am being stupid, but this is the only place I can speak freely about it all.
Thank you for reading.
June.
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Popsic
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Hello there. I am 18 years post op. All I can offer you is the fact that I was fine for 14 years and then started to run into some problems (all manageable but new). One of the best things that was shared with me by the consultant was a reminder that everything ages, not just the outside. So internally things start to sag or reshape and become less effective. So, new symptoms aren’t necessarily a sign of something awful, just a sign we are getting older. Great advice. But, in terms of putting your mind at rest maybe, if you can afford it, a private scan of your pancreas may help. If its negative then you may be able to manage your thoughts better and if its positive you can discuss this with your GP who will certainly act.
That's good to hear, I am 14 years post op and having a mir dumping problems than ever. My Go said something along similar lines that aging does have an effect too. Well done on 18 years
hi June, I’m sorry to hear of your worries, but I totally understand. I’m just over 2 years post Ivor Lewis and I’m constantly obsessed with thinking things are going wrong. I also have mental health issues and think that this contributes to negative thoughts. It’s very natural for all of us who have gone through this cancer to worry and to analyse symptoms when something changes. I would try to explain to your specialist nurse how much this is concerning you and hopefully they can reassure you. Wishing you all the best.
I will be having a chat to the consultant tomorrow and hopefully he will be able to give me some advice. I know what you mean about the mental health side, my Bi polar really does get a hold of me, constant battle.
Congratulations on your 2 yrs, here’s to many more. !
hi Popsic..long time..glad your still doin ok apart from this,maybe overthinking it,but if it’s causing you anxiety,best put forward your questions and tell them the worry it’s causing,as we all know it’s the not knowing which causes the most trouble.They obviously don’t realise the anxiety it’s causing..demand answers and put your mind at rest..stay well Marc
Hey Marc, lovely to hear from you. Hope your doing OK.Just got back from hospital, all went well I think. Have a follow up with possibility of a stretch again. At that point I shall voice my concerns and see what happens. My anxiety just lately has been bad, I know what is causing it, just have to work through it. X
I had 10 rounds of intense radiation treatment in a October,but then have to wait 10 weeks as it carries on working,then an X-ray to see if it has damaged the lungs ,then another CT scan to check results..another 3 weeks,so only got results 2 weeks ago..Which are good..tumour has shrunk and Lymph nodes are stable,which is brilliant but the anxyof waiting has been horrendous,and still get chest pains ..I now have a constant dry cough and voice is still a whisper,but still going ..so I know what your saying about the anxiety,it’s worse than coping with the cancer.
If you know what is causing it your half way there,just a matter of trying to rise above it.
You seem to be coping really well,so keep plugging away at it..I’m sure you’ll come out on top soon 💚
Oh Marc that's great news about the shrinkage. I will be praying for you. Lot d treatment to go through though, glad your doing ok.
Well had endoscopy, was a bit surprised with the outcome. Apparently I have Bile reflux ! Don't know much about it yet as I am still a bit sedated and my head is swimming. I so know I have to take care now. I am now wondering if I have been taking the omeprazole for.no reason for the last 11 yrs. It doesn't help.Bile reflux Apparently.
It will be interesting to see the consultant about it. It has been suggested another dilation could be done, I don't mind those as I'm knocked out completely , although the doc was good today, gave me 50mg of Fentaynl, brilliant stuff haha. There is an operation that can be done to divert the bile away from the stomach , don't know if this will be offered as an option. For now I will just be watching what I am eating and the portion sizes.
I do wonder how many people find anxiety increasing after Ivor Lewis. 6 years on I still get worried about any new health problem. Thing is, as someone else said, we are getting older too. I have always suffered a bit with anxiety but it has gone much worse since cancer and at times it can still take over. One thing I think we have to do is to listen to our bodies and minds and take care of ourselves. Trouble is that we probably all look just fine. Don't think I'm putting this very clearly but maybe we should all open up more about mental health?
Hi grandylyndaI absolutely agree with you. I think we forget that our mental health suffers. I have had therapy for it, helps a little. I hope your OK, we are all here for you. Xx
Hi- I know exactly how you feel! I am 12 years post op and still get upper abdominal pain on a regular basis - I occasionally have a panic and think is this something more serious, but then give myself a good talk as the pain has not changed in many years. It’s mostly if I have moved too quickly after a meal, I have to let the food rest. Can also sympathise with the bloating, I cannot eat bread without it and cakes for me are not a good idea. I have never taken Creon - didn’t even know that was an option, but have Lazoperosol daily, without it the acid reflux is frankly debilitating. Perhaps keep a diary of what you have eaten and done to see if there is a pattern? I think there is more than a element of realising our digestive systems are not the same as they were and never will be - however if new pains happen it’s always worth talking to your doctors about - with out doing that 12 years ago I wouldn’t be here now. Wishing you all the best
Hi, thanks for your reply.I think the pain has just increased lately, but the same, if that makes sense.
Creon is a godsend, without it I'm on the loo within half hour. It just slows down the food
. The endoscopy showed Bile reflux, which isn't helped by Omeprazole etc. So , low fat diet , no or little alcohol, anything that triggers it really. I'm just glad it's nothing more serious, atm. I think my docs ate getting sick of me if I'm honest, I am trying not to worry so much about things now.
I can never seems to get the eating under control. I'm never hungry until I start eating, then I can't stop ! I've put on weight and am desperately trying to lose it, but it's so difficult to. I am amazed at what has been done and things progress every day.
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