Thanks in advance for reading my post and for any help you can give. My husband (57) has been suffering with excessive belching for the last 4 months. He has had an endoscopy and was diagnosed with a reasonable size hiatal hernia and also tested positive for H Pylori. He has been treated for the h pylori but the belching persists. Its not every min more like every 10 min or so and he does not do it at all at night when he is sleeping and it doesn't interrupt his sleep. He says it doesn't bother him. I have read over and over that this can be an early sign of PC and am so scared. He doesn't have any pain or change to bowel movements and has not lost weight. The Dr says it wont be PC and is reluctant to investigate further. I don't think its the HH as it happens all day every day. Can anyone tell me if the belching from PC is near constant and if any one had this as their first symptom? Im so scared and am struggling to function. I don't want to miss the opportunity to catch this early. He had normal blood work and that was all fine. He also had 2 abdo CT scans 2 years ago. Any advice or experiences greatly appreciated!
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Soscared
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Hi not sure if I can be of any help but I was diagnosed with pc in 2009 and lucky enough to be here to tell the tale. I can't remember having any belching apart from the normal wind I lost 4 stone in 3 months and my bloods were abnormal along with stomach ache and change in bowel movements ( quite significant) so the very opposite to your husband. Human instinct tells you to surf the internet for answers from those inline medical and self diagnosis pages I did exactly the same. I know it's not really advisable but please be careful when doing that as I found it's all doom and gloom. My diagnosis was made through a routine blood test which resulted in a high enzyme count in my liver and then a ultrasound scan and ct scan all totally opposite to your husband. Now everyone is different and cancer presents itself in various ways. Go back and speak to your doctor ask him to give your husband blood tests ( liver function kidney full blood count and any other possible test with blood) the key to beating any disease is early detection. The only thing I get occasionally now is heartburn or acid reflux if your husband suffers with that then ask the doctor for omeprazole. Going on what you have said then I would say your husband is fine but I'm no doctor go back and see him get the tests done and reassure yourself. I hope i have been of some help in reassurance but I don't mind talking about my journey if you need to chat. Graham
Thank you! He has had blood work done, all normal. We are due to go on holiday so we are going to try and forget about it for now and maybe just watch and keep an eye on things.
Hi, I am the same worrying about PC as it so deadly. I have been having bad stomach pains for over 2 years and pestered my GP over and over, but all tests bloods etc come back normal, my ultrasound was normal but he failed to mention that due to gas in bowel could not see pancreas !! Had an unprovoked DVT in December and the A&E consultant said "that could be cancer" OMG why say that to someone who is already feeling crap. When I said "do I need to come off HRT" was told it was that and no further tests needed. Due to sheer determination I got my GP to send me for a CT scan on Tuesday, now waiting for results, but me being my stupid anxious self is scared of a call to say there is something. No one has called yet, it that a good sign or have they not looked yet, I am a nervous wreck. I do not have burping, but pain in the epigastric area and left side. My eyes are slightly yellow, but according to GP and opticians not jaundice, just age related I supposed. My bloods are all well within normal ranges, even amylase which checks pancreas, but when you google there is always someone whose tests were normal but had PC.
hi. I'm also waiting on results from scan. organic GP said it's just a hernia we do nothing for that.. couldn't be leave it.has taken 9 months just to get bloods and a scan done through the hospital. Major pain in the back an up between ribs n chest. not keen on eating. I get results on the 13 th.
I understand that scans and bloods often come back normal but there are patients with experience of PC where later things have proved far from normal. If you have symptoms don't accept that all is well, ask for 2nd opinions and repeat tests.
How can the scan come back normal if the X ray can see through your body. My ultra sound missed my pancreas and I was so hoping that the CT scan would rule anything out.
I had gas that covered the pancreas on ultrasound, a common thing that patients report. I read a patient story yesterday of somebody who got a clear ct scan yet had a large cancer tumour on the head of pancreas; how this could not be seen is incredible. If you have pain with or without any other symptoms and the ct scan comes back normal, it doesn't rule anything out, they just have not seen the reason for your pain. Until the pain goes keep on looking for the reason why. x
Hi Graham, great to hear you are doing well. Sorry to join in but I am having tests for pc at the minute, GP just being cautious. My bloods are all ok, just received amylase today which was normal, liver function normal, but googling say's that bloods can all be normal and you can still have pc. My main problem is the pain it is on left hand side, just below ribs and also towards the middle and in the upside down v area between ribs, was your pain there? No real change in stools, no weight loss, no jaundice, (I think eyes look yellow no one else does). Waiting for CT scan, did have ultrasound Aug last year, all clear but did say they could not see the pancreas as bowel was in the way. It would be helpful to know whether you lost a lot of weight and how you felt in general, if you don't mind answering that is. Thanks
hi. I have the same pain.. makes me feel 66 instead of 46. I'm also tired all the time. not a great paper tight pain is what gets me. I also have a hernia /bellybutton so GP said it was just that but NO.its more..
some patients don't lose weight, there are other types of pancreas problems where there is no jaundice, weight loss or appetite issues. It is common for scans to be misread. NHS Choices web pages advise that pain is your body telling you that something is wrong, keep remembering this if you are dismissed and told that all is well. If you have pain all is not well, keep at them and have repeat tests.
Hi, have you had experience with PC as you seem to have more knowledge than some us on here, I also believe that not everyone has the same symptoms, which is what I tell my GP, to no avail.
I have a long story over 6 years now. I am still untreated and undiagnosed. I have spent many hours researching the long list of possible reasons for my pain which is; epigastric radiating to the back, at the worst when supine (laid down), worse after eating larger or rich foods, worse with alcohol, until the past months was mild and tolerable during the day, but severe at night. My comments about ct scans misread is my own experience where radiographers (2 scans) said normal, yet a consultant (2nd opinion) said there was a tiny cyst on pancreas tail, he then changed his mind a few months later to say it was a fat deposit. I have a family history of NETS which are the tiniest of tumours, 50% benign making the other 50% malignant, it is normal for these never to be seen on screening, they are slow growing, often over 20 years, symptoms are subtle. Gastrinoma symptoms can start with just diarrhea which I have had for over 20 years, every day, unexplained and undiagnosed, some patients get pain like mine, some get no symptoms at all. There are other NET types, they are not exclusive to the pancreas, they can be anywhere in your body, even on the skin - Merkel Cell Carcinoma. It is important to remember that not all of pancreas problems are cancer, if you think that any changes can cause pain. Pancreatitis is a serious disease and I have been repeatedly told I don't have this, yet I read this weekend that calcification, the deposits that form with this disease that they look for on scans, is often not seen for 5 years from symptoms arising, especially in women. I could go on, but I have been and continue to be dismissed and not taken seriously, yet my GP prescribes morphine for the pain I have, at least that is addressed and 'our pain' is telling us all to find the cause. My GP advised not to look at the internet for answers; however I find that at my practice the use patient.info/health/the-pan... - one of many similar sites I have found useful for knowledge. If you would like to read true patient stories use pancreasfoundation.org/panc...
One of the main reasons for your pain not being recognized as pancreatic related is that the common/normal symptoms are jaundice, weight loss, steatorrhea and pain, generally for pancreas head issues; this criteria does not fit with everyone, if you read patient stories you will understand.
Don't give up, I feel I am nearer getting to the truth, it has perhaps gone on longer than it should as sometimes you need a break from it and just take the pain medicine and try to live your life with the knowledge that something is wrong, one day you will find what it is. x
Hi thanks for reply, you sound just like me, I have had stomach related pain and symptoms for years as well, always GERD, IBS, Diverticular, bloods always normal, amylase normal, LFT's normal apart from slight fatty liver. I have a colleague at work who had bowel cancer, all ok now, but no weight loss or pain just blood, so we are all different. My eyes are yellow, but GP and optician cannot see this, other people can !! Will post when I get results. Take care
thank you, you take care too, don't let any of this get you down, allow it to make you stronger, if you think you eyes are yellow, get a somebody to take a clear photo, for your records, most important to keep records and also note down any comments. "... is too rare for you to have", you may think bizarre but it was said to me, my husband was there too. x
One thing my GP said and I think is right is that pain from PC is the last resort, it is a silent cancer. I have been complaining for over 2 years and logically would be dead if I had PC not here with no symptoms apart from stomach problems, if you look up PC stories everyone who has had pain has been seriously ill within weeks. So am hoping that scan will show nothing and I can get on with my life. My optician said some peoples eyes are yellow and as I am 58 today it is probably age related.
Hi got CT scan results back today, I have small para aortic nodes and increased thickening of stomach wall probably because it has collapsed ! Report says nothing to worry about, google say's otherwise. Will be seeing GP next week to go through it with him.
hi Sausagehead, I'm new here. Your the first person I've come across that has lost so much weight In a short space of time. I've lost a stone in four days, my GP belived it to be from Anxiety. I've done some research to find this out but that was a negative you can't loose that much weight from Anxiety or Stress!
so as I kept reading going through Google I came across PC I read the symptoms and saw that is what I'm suffering from, as scared as I am with all this this forum has given me some hope.
I'm heading back to my GP to demand to put me through a CT scan and more blood works the lot, I see that PC is a hell.of a nightmare to catch it early. So I want to get to it before its too late!
sorry for sounding depressing here,
As for Soscared I happy to see that the tests came back positive and I hope you and your husband have a fantastic time.
all the best to and thanks for taking the time to read this.
sadly being dismissed is so common as GP's look to save money at every opportunity. Your husband is entitled to treatment for whatever problem he has and belching during sleep is not normal and if you are not taken seriously with the PC then insist on them solving the belching problem. Your experience is normal but don't give up!
You can pay privately for a GP appointment with Nuffield Health, more info online, they have hospitals everywhere. They can then refer you to the appropriate consultants, as you have private healthcare this may be the route to take and bypass your reluctant and unhelpful GP.
I have very similar symptoms with blood tests all appearing to be OK. This has been going on for so many years now I don't remember how long it is. The pain has been bad for at least 5 years.
In pain now upper right abdomen and through to my back between right shoulder blade and my spine. I am so tired of being in pain and getting no help. I do have IBS but that is not what is causing this awful pain.
I have had scans and been told my gall bladder is fine when in fact I was referred by my GP because she thinks I have pancreatitis. Were they even looking at my pancreas? I was just told at the hospital they could not see anything wrong, but would not give me an MRI, too expensive it seems. I am very fed up with the NHS right now and sick of being in pain, there is something very wrong and it just never gets resolved.
Taking lansoprazol which helps a little but not much. Co-Codamol for pain does nothing to help, I need to know what is wrong. I feel I am being treated as if I am inventing this. For the life of me I cannot imagine why anyone would invent feeling ill all the time, all I want is for this to be properly diagnosed and treated.
I am sure it is my pancreas because I am getting diabetes symptoms and I just don't think my panceas is working properly. I am now being treated as pre diabetic, but at the same time I also have damage to my eyesight, and am having to have eye injections to save my sight.
I am told this damage is caused by diabetes, the GP says I don't have diabetes only raised to pre diabetes level. Hospital say the damage to my eyesight is so severe my diabetes must have gone on untreated for some time. I go back to the GP and tell her this, she still insists I don't have diabetes but is now treating me incase I develop the condition. Now does this not sound as if something does not tie up here.
The info on pancreatitis does say it interferes with insulin levels and and can lead to diabetes. All that is happening is that I am exhausted all the time and feeling more and more ill as the months go by, but nobody can find out what is wrong with me. I think I am going to have to face trying to get an appointment with the GP again, but that is such a fight. Just getting the receptionist to agree to an appointment with the GP is an uphill struggle, then I have to go through agreeing to a phone call from a nurse or GP who will decide if a face to face appointment is required. This does not just apply to me it is how our surgery operate their system now. They call it Doctor First, I do wish they would try to make it patient first.
Hi my husband was diagnosed with pancreatic cancer last year he had lost over 4 stone in weight in 4 months and a change in his bowel habits he had 3 days continuous vomiting and was admitting into hospital was diagnosed by having CT scan done I do hope this helps. soscared
So sad reading some of these comments, doctors not helpful. My poor old dad, just turned 80 two weeks ago was diagnosed with PC. We have spent the last few months having various tests, none of them came to the conclusion he had PC. the abnormal liver reading, they said its drink, my dad hardly drinks, he started losing lots of weight. He was burping. He had diarrhea. Doctors cancelling appointments. Getting palmed off with the practice nurse. Had full bloods done. Endoscopy. Ultrasound. Outcome ulcer, letter took over two weeks to arrive after being written only to say get some antibiotics and in six weeks have another endoscopy. We thought diarrhea was caused by the tablets, saw a nurse she changed them. Still off his food, losing weight and having diarrhea. Was beginning to feel unwell. He had too much faith in the NHS, wouldn't let us pester the doctors. Through all this no one had ever examined him. then two weeks ago he started turning yellow, rang doctor said go to A&E, doctor gave us all the results from his tests to take with us. Blood results did show the bilirubin to be very low. one result said couldn't examine pancreas as too much gas. had ulcer and pilurus. Went to A&E, the doctor took one look at him and knew instantly, felt his stomach too. He said to us he wont be going home tonight. Why arent the GP's taking more care !! Disgusting treatment. Obviously, had to be confirmed by a scan. Didn't realise that hospitals practically close down at weekends so had three agonising days waiting to have a scan on the monday. Two weeks later still do not know anymore. He had a stent a week ago, which has helped but unfortunately got Sepsis, so was rushed back in, managed to survive. Came out today. I am going to be on the case tomorrow as we want to know what is next.
So my message is keep going back to the doctors, our experience is they are too busy to look at the notes and contact you. Insist on seeing the doctor and don't be fobbed off. A lot of time was wasted for us.
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chemo didnt work
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T4 inoperable pancreatic cancer