25 year old male. Imminent diagnosis, I am almost certain

[longseason]

Hello, I have not been diagnosed yet but fully expect to be over the next few weeks. Rest assured I am not a hypochondriac, though one or two doctors have implied this (and how I wish they were right).

Anyway, over the last three and a half months I have experienced chronic, ominous and persistent symptoms that appear to point to nothing other than pancreatic cancer, despite the roughly one in two million odds of someone my age getting it( I have spent a lot of time reading up on it, who could blame me....). It all started with a loss of appetite seemingly overnight sometime in early August of this year. Around the same time as that I began experiencing mild gas and pain, flatulence and bloating etc as well as less frequent bowel movements. After about 3 weeks I went to the doctor and he for some reason prescribed me omeprazole, though I'm not really sure why as I never even complained of heartburn...Also took bloods, they came back fine.

About a month later I saw another GP as my symptoms persisted and his attention turned towards the irregular movements(wish I just hadn't mentioned this now tbh), told me I was constipated and this could be causing the lack of appetite and bloating etc. He prescribed me laxatives. Sure these made me go more often but they didn't restore my appetite, and I never really felt that they would. See, it's not so much that I have gone off food because I feel bloated, but rather I have lost the ability to feel hungry and I'm in a state of constant satiety. I still enjoy eating and do so to keep my energy levels up, but I never actually crave food. In fact, recently I have actually gained weight because I have been binge eating out of depression, despite the no appetite! My family don't understand this and think I must have an appetite if I am eating, but I contest this as does in fact, medical literature...

Anyway, after a several more weeks of no let-up and beginning to suspect something serious was up I asked to be referred privately to a gastro specialist. At this point I had colon cancer(similar symptoms, considered pancan just too rare to worry about) in mind and asked to be given a colonoscopy. Colonscopy came back clear and this was a huge relief for only about a week, as leading up to I felt awful and just felt like I KNEW something serious was up. Doctor prescribed me mirtazapine assuming that the loss of appetite was just anxiety related and that was that. Deep down, though, I just felt like something was wrong and when mirtazapine failed to restore my appetite my attention began to turn towards pancreatic cancer, something which I had previously ruled out as being too rare. As I looked though, I realized my symptoms just matched so perfectly, I couldn't help but overlook the age thing....

Shortly after this I saw a forth doctor and encouraged her to give me an ultrasound, though she took some convincing and seemed satisfied with the previous doctor's diagnosis of anxiety. Anyway, my ultrasound is due for next Monday and I fully expect something serious to flag up. I think this because there is a lack of anything else my symptoms can really point towards. Recently along with the previously mentioned lack of hunger, bloating, infrequent bowel movements, nausea etc I have began experiencing back pain at night/morning that goes away with movement over the course of the morning, which I understand is a pancan redflag, as well as general epigastric pain at times. Still though, overall my level of pain is low at this stage, which I understand isn't uncommon for pancreatic cancer. And it has increased slightly...

It's also worth nothing that my stools have been bulky, very smelly and floating for a while, but I never gave it much thought before

All in this is all pretty devastating and I have no idea how much family are going to cope with this. I've had two blood tests and no doctor has been alarmed by anything I have presented with, which my mum finds reassuring but I can't help but think that's just because doctor's don't associate pancan with young people. I'm just convinced my total loss of hunger is cachexia (cancer caused anorexia), and along with the other symptoms make pancreatic cancer seem undeniable, unless somebody can think of something else this could possibly be? I'm at a loss...

[Ruthus]

Welcome Longseason

I am really sorry to hear about everything you are going through. I think it is good that you are having an ultrasound scan soon as this will show up any abnormalities in this area. The stools or bowel movements with PC tend to be pale, oily and floaty, sometimes ribbon like. Jaundice and dark yellow urine are other classical symptoms of PC. You haven't mentioned suffering with this and you say both blood results have come back satisfactory. Usually if there is an obstruction in the bile duct the liver enzymes will be greatly elevated so this maybe a reassurance to you that this is not the case for yourself.

I am no medic and of course you are right in having all your symptoms checked. I hope it is found that there is a less sinister cause to your symptoms.

Best of luck Ruth

[Justamo]

Hello LS, really sorry that you are so worried and upset.

I think you should get in touch with the Helpline on this website. The nurses are amazing, very experienced, and know this awful disease inside out. Please call them.

May I ask if you are suffering from jaundice ? Have you been tested for high blood sugar ? Did your blood test show high enzyme levels ?

Your anxiety is understandable, this is a dreadful disease.

I hope you get a firm diagnosis very soon.

Best wishes, Mo

[longseason]

OK, thank you, I will get in touch with them.

No jaundice, but that only affects about half of people with PC, any tumour I have is more towards body/tail. Blood enzymes are fine, though that often doesn't mean much.

[Didge]

I do understand your worry but your symptoms do not seem to be those of pancreatic cancer so I hope you will get the all clear. Did you get CA19-9 blood test? And in my experience the bloating with pancreatic cancer cannot be over ridden. In other words, those who have that symptom cannot binge eat. There are many things that can cause your symptoms and yes, I do think you need to keep pressing for answers until you get a diagnosis. As others have said, we are not doctors and if you ring the nurses they may be able to reassure you better. But try not to think the worst when it is likely to be something else.

[longseason]

From what I have seen online these are textbook pancreatic cancer symptoms, particularly tumours of the body/tail, which tend to be more insidious. I would say a lack of hunger does constitute a lack of appetite. Don't forget I am also on mirtazapine, which often induces munchies, though I still lack that indescribable hunger feeling. And no I have not had that test.

[Didge]

I don't think they are. My partner had a tail tumour and his pain at the side, which is where the tail is of course. Head of pancreas tumours tend to cause a gnawing pain in the middle which goes through to the back. It is true that pancreatic cancer does cause a variety of symptoms, which is one reason why it is so difficult to diagnose. But since I have had experience if it, I have been alert to symptoms in people I know and I have insisted on 3 people getting tested, all of whom had very worrying symptoms and none of them turned out to have it. The latest had the gnawing pain going through to the back, dizzy spells and other 'toilet' symptoms. I was really very worried about him, but it turned out to be fatty liver syndrome and he now has to follow a special diet. Trouble is, on here, we are all alert to pancreatic cancer, so we forget that most of the symptoms can indeed be due to something far less sinister! Good luck and let us know how you get on.

[longseason]

I think pain with cancer can a bit of a lottery earlier on, depending on what space it's invading. Not to say I'm not in any pain, it's just vague and infrequent at the moment.

And thank you I will do, praying for a miracle from my point of view.

[Didge]

In the 3 years I have been a member of this forum, I can't remember anyone who came on to the forum worried about having pancreatic cancer who turned out to have it so I do hope you are one of them! But as I said before, you do need a diagnosis so keep going until you get one.

[Proud Wife]

Hello Longseason

I am so sorry to read of your worries and would very much like to try and put your mind at ease, pending the results of your ultrasound, which I think will be really good for you. Didge has made some very good comments. Especially reading eating. You say in your first post that Mirtazapine failed to restore your appetite but you also acknowledge that it can also bring on the munchies. You also said initially that you were convinced you had colon cancer. Yes, you definitely need investigation - these type of symptoms should never, ever be ignored but your ability to binge eat, together with the vague and infrequent pain would suggest to me that PC could well be unlikely.

Please don't get me wrong, I know your fears are very real but as an outsider (speaking as someone who simply nursed their husband through PC and without any medical qualifications whatsoever) it appears to me that you could be talking yourself into believing you have some kind of sinister disease, without realising. The mind can be very powerful and I'm wondering if that in itself could be affecting your lack of appetite and early satiety?

I can't see that you are suffering from Cachexia. You say that you enjoy eating and have even put on some weight. My husband couldn't even look at food so I personally I would find your ability to eat reassuring.

I know it is really, really easy for me to say but could you possibly try not to worry about what your symptoms could or could not be until you've had the results of your ultrasound. I am really concerned that your anxieties, although perfectly normal and understandable, are making you feel even worse. I remember my husband saying when we were waiting for scan results to see whether disease was stable or progressing, words to the effect of "you cannot change the outcome so worry about it IF it happens".

Please don't think I am dismissing your fears and I hope my post does not come across as harsh (if it does, I will happily delete as I have been debating whether to say something or not) - I just hate the thought you are working yourself into a frenzy when it could (and I'm only saying could) be something else.

All the very best

Proud Wife . x

[longseason]

Hi Proud_Wife, it's really not a craving for food though, I eat because I still enjoy the taste and to take my mind off things. Also because I'm a conscious not to waste away. Sorry to hear about your husband, but did he find eating difficult before diagnosis? I often hear of people purposely eating a lot before chemo so they have reserves, So I'm not sure my ability to gain weight is reassuring.

[Proud Wife]

Yes absolutely. And it was because of his inability to eat (he was in such severe pain it was affecting his appetite) that after 2 kidney stone operations, we didn't believe the surgeon on the 3rd consultation that hubby had "pulled a muscle on the operating theatre table). At that visit, we were told that no stones were visible so if he was still in the same amount of pain and the same type of pain, it didn't take a brain surgeon to work out that it couldn't have been kidney stones. Hubby was literally fading before my eyes through lack of nourishment so I knew something was wrong, I just had no idea it was PC until I got a copy of his CT scan report.

Yes, people do try to eat a lot before chemo in order to have reserves but they have to be able to eat. I would say it was probably a good 2-3 months after hubby started folfirinox that he started to get his appetite back and that was only due to a heavy dose of steroids and anti sickness medication that helps food pass through quickly.

Feel free to ask anything else if it helps. xx

[longseason]

How long did he have symptoms for before dx? Did they progress quickly? Where was his tumour, tail?

[Guest]

Hi Longsessions,

I am sorry that you do not yet have a diagnosis for your symptoms although I have to agree with Didge and PW's experience and say that it does not sound "text book" PC (whatever that is). My husband had a tail and centre tumour and it was picked up initially by a colonoscopy, where the mass was clearly visible with the equipment. He then went on to have further tests, including contrast scans and an EUS. The PC cancer is only 100% confirmed and typed with a biopsy.

I am absolutely sure you have real and distressing symptoms and digestive disturbance but it really is extremely unlikely that it is pancreatic cancer, which is a positive thing. Again, I agree with Didge and the others that you need a diagnosis and a treatment plan but extreme anxiety cannot be helping your general health, pain or digestion. When researching without the appropriate medical or physiological training it is easy to forget that the available information is not complete or comprehensive, drawing conclusions from it is dangerous and can be very upsetting. Any number of digestive, kidney or liver conditions could cause some or all the symptoms you describe not just PC. I think the best advice any of us can give is to allow yourself to be reassured, concentrate on eating small balanced meals, taking some gentle regular exercise and waiting for the ultrasound results. You must also be prepared for them to be inconclusive or negative for tumours, at which point you and your medical team will have to start looking at possibilities.

We have all got used to instant information and results but medicine is not like that, no two people are the same and diseases manifest in different ways. I have three brothers who have a genetic issue that means they have polycystic kidneys (same as my late father) none have the same symptoms...

There is not a person on here who doesn't know what waiting is like or doesn't think that tests should be done more quickly and the results processed immediately. Waiting is hell but until we can change the protocol, must be endured as calmly as possible.

I send very best wishes and please do let us know how you get on.

Marmalade

[longseason]

Hi Marmalade thanks for your input, what you say about the colonoscopy is interesting as I've had one myself, how was the mass visible from that as it only checks the colon? Was it particularly large?

I understand that lots of problems can cause digestive complaints but I find the vague, chronic presentation of my symptoms along with the lack of hunger worrying, and seems to point more towards cancer than anything else. Also my new onset morning back ache has been particularly distressing for me, as I'm not prone to that sort of thing.

[Guest]

It was a CT guided colonoscopy so the pancreatic mass was visible

M

[BlacJAC]

The best piece of advice I received during my long and stressful pursuit of a proper diagnosis was from a GI consultant. It was not to look up symptoms on the internet because whether the information looks straightforward and easy to follow, we are in no position to put that information into context. His reasoning was if google was a realistic and simple diagnostic tool, there would be no need for medical students to dedicate years of their life to learning about specific areas of medical science as we'd all be able to do it within 5-10mins.

Google does have its place. It's an invaluable tool if you've received a diagnosis for any given ailment, it's a good tool if all other tests have come back clear as it can give you additional information to discuss with your GP, but it's biggest shortcoming is it won't tell you what's not and what is wrong with you.

I feel your anxiety and completely understand what you're going throuh because I was that guy this time last year. I came on here convinced I had cancer. I had actually planned it all out in my head that last Christmas was gonna be my last, I wouldn't be here this time next year, I wouldn't see my daughter move up to high school etc as all my symptoms according to google pointed towards PC. It could be nothing else. I had red flag symptoms (dodgy pale stools, weight loss, URQ pain etc) left, right and centre and nothing else ticked all the boxes only PC and at best chronic pancreatitis.

I also get the feeling and like myself, that once you get your US and it shows nothing it's only going to allay your fears/anxiety for a week or 2 because you'll go back to reading how a lot of PC's are missed during an US. Then you'll be back to square one. It's a vicious cycle. I have come to accept my diagnosis because I've had every imaginable test under the sun other than a PET scan.

My advice to you is push for a diagnostic test that will realistically allay your fears and keep pushing for it. Until then you're always going to find yourself back in the same place you currently find yourself.

[Guest]

Very well put BlacJAC, I hope you have found some relief from your symptoms and are feeling better

Marmalade x

[longseason]

Hi BlacJAC normally I'm not too anxious about this sort of thing I just find my symptoms really worrying, last few days I've had an uncomfortable feeling of trapped gas in my lower back...

Are PCs really missed on US a lot? that is disappointing to hear....

[Dandygal76]

Hi,

I do absolutely agree with everything that has been said on here and I wish you all the best longseason. The chances are firmly in the court of you not having pancreatic cancer and you need to hold onto that. What I do want to say for anyone reading this is that an ultrasound is not the best method to detect pancreatic cancer. It cannot often reach the area you want to view. I know of many people, including my dad, where this method of scanning was inadequate when it comes to pancreatic cancer.

I wish when people seem to get acute anxiety over these things that they are not just given an MRI scan. By the time you fight all these processes it would be cheaper and beneficial to all. If you can raise the fund you can get a scan for between £500 and £1000.

All the best. x

[longseason]

I actually asked the gastro doc for an MRI but he talked me out of it, which I'd be more insistent now..

[Dandygal76]

If he is reluctant then perhaps ask for a CT - it will do same job but is cheaper. But, if you are trying to quell the fear of Pancreatic Cancer then the ultrasound is not your 'for sure' answer. CA-19.9 markers are also not your answer as I think around 5% of people do not produce it. I really d0 agree with Didge though in that we have seen a few people very scared after this gets in their head but no one has been diagnosed. Try and relax - on the flip side of the coin... an ultrasound does diagnose many people as well. All the best. x

[BlacJAC]

Hi longseason, I didn't mean to freak you out and it was never my intention to do so. However, you seem to be following the same pattern I went through during my entire diagnostic journey. It starts off thinking if you speak to a GP and s/he reassures you, you'll be fine, you read more, freak out more and move onto wanting a blood test. The bloods come back fine, then you read more and suddenly realise that bloods aren't the be all and end all too. You then go for a US, get told it's fine, then you read more information on the net and soon realise that a US isn't as reliable to and so the cycle continues. The first thing I typed into my phone once I had the procedure was "Do ultrasound scans miss PC" or something along those lines.

It was noted they managed to get a very good image of all my pancreas when i got mine. They actually went over it 4 times if i recall correctly (front and back)and spent what seemed an age around that area. Still wasn't enough for me as that seed had been planted. I suspect you'd have eventually read that afterwards too, so rather than go looking up more unnecessary stress related info, I thought it would be best to get it out the way.

Something I've picked up upon here and elsewhere, it's sometimes just a simple task of asking the sonographer if s/he managed to get a clear and unobscured image of your pancreas. Some people are fobbed off with "well, I saw most of it and it looked ok". I know the thinner you are and the less stuff that's sitting in your stomach, the chances of them getting a good image are higher. When you get the US make sure you ask the person doing it whether or not they managed to view the entire organ. Something that a US is good for is your liver (which can cause the exact same issues as your pancreas). The problem with the pancreas is its situated in one of the worst possible places to view.

[longseason]

Had an ultrasound today, radiographer said it looked normal but I suppose a radiologist has to look it before we know anything for sure? Told me to book an appointment with GP. She was also quite moody when I asked questions about a 'clear look of the pancreas etc' and said a CT scan is better for that, but said she got a decent shot of it anyway. Still feeling mostly pain-free(apart from the odd jolt as usual) but still no sign of hunger and uncomfortable feeling of trapped gas in lower back remains.

[longseason]

So ultrasound is confirmed normal, although 'limited images of pancreas obtained', annoyingly. GP isn't being very cooperative, thinks that my lower back pain, lack of appetite amongst other things is all just IBS. I have been feeling pretty ill last few days, have even found blood in my stool(pancreatic cancer not a common cause of this, but a potential cause nonetheless). Have back pain that keeps me up 2nd half of night that I'm worried about, feels spinal. Gonna have to go private for a CT scan I guess as I really have not been feeling all that well last few days, unusually tired at times and have mild night sweats.