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


longseason
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Hi Longseason. I do hope you get to the bottom of this as clearly something is wrong and you are not feeling well. Let's hope it is something relatively benign and you can be returned to good health quickly. Wishing you luck and let us know when you find out!

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Ask to be referred to a GI consultant and the first thing I'd ask is to get a colonoscopy. Don't ask your GP as they don't tend to agree to them unless you have red flag symptoms. Whilst blood is a red flag symptom, if it's bright red, then they just pass that off as being a pile or a tear at your age. I think the worst case scenario you're looking at, at your age is having something like Crohns or UC. Both of which can have the exact same symptoms you're having. Someone can jump right in here and correct me, but isn't PC or any pain coming from the pancreas usually located around the mid drift and higher up rather than the lower back?


I've suffered from lower back pain for years (was diagnosed as a disc issue via MRI a year or two before my GI symptoms appeared)and I mentioned this to 2 of the GI docs I saw as I thought I wouldn't really know if I ever got new pain from another ailment. Both said if the pain disappears or improves with anti-inflammatory drugs, then it's not cancer pain and what pain is there is usually located further up due to the nerves involved.

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Hi in my first post I mention I've already had a colonoscopy, I got it done privately because I was worried about colon cancer when this all began.


And my lower back pain is weird, it's almost like buttock pain, really quite mild and just sort of throbs. Could be unrelated to my other symptoms, I don't know for sure.

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  • 3 weeks later...

I'm in a bit of bother right now, I've been feeling crummy over the holidays but can no longer afford a private CT scan. I have been getting upper back nerve like pain now which I feel could be referred pain. I'm seeing my GP(the one who has continually brushed me off with a combo of health anxiety/ibs) again tomorrow and just hope I can convince her to give me a CT scan. I've thought about going to A & E but I'd probably have to exaggerate my symptoms in order to get one, and the whole process seems kind of stressful and I don't want to wait there for hours and be turned away with omeprazole, oh lord...


I'm 5 months symptomatic now and family and friends try to tell me that if it was cancer I'd 'be a lot more ill by now', but I know cancer is far more mysterious than that. I know it's exceedingly rare in people my age and I almost can't believe it myself, but my symptoms remain unexplained and if it's not cancer than I don't know what else could be causing my plethora of symptoms.

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Hi Longseasons, I have been thinking about your pains and worries and wonder if you have considered changing your GP? You don't have to stay with a doctor in whom you don't have confidence. Perhaps someone else would take a fresh look at your symptoms and come up with a different approach.


M x

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Marmalade wrote:

> Genuine question Longseason, why are you convinced your GP is wrong?

Because I have pains that I don't think can possibly be attributed to IBS. From what I see IBS causes mostly severe abdominal pains, whereas mine are vague and tend to be more back related, particularly lower back. GP just says 'ibs can cause back pain too', which is possibly true, but I think in the absence of any major abdominal pains this is unlikely. Also I don't have the typical IBS diarrhoea, more like constipation, with diarrhoea once a week or so. Finally, I don't think a lack of appetite is typical of IBS. And I did see another GP and he agreed with her and just gave me a FODMAP diet sheet and told me to calm down a bit, so I'm going back to my original one and will try to be more insistent this time.

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Hi Longseason,


I have to admit that on rereading all the posts and the symptoms you describe I am struggling to understand why you feel so very strongly that you have PC and that this can be the only possible explanation of your symptoms. I have no doubt you have symptoms and that you find them distressing. I have also been through GP's who are lazy and don't look beyond the obvious so I am not dismissive but would be more wary.


You say that you enjoy eating but don't have an appetite, what does this matter if you are eating regularly and maintaining or putting on weight? Many of us eat without ever being hungry, we eat out of habit because we know that if we don't we will be hungry later when it's less convenient to eat.


You have not mentioned what sort of diet and lifestyle you have but presumably your doctor has discussed this before coming up with anxiety and IBS being the cause of your discomfort? I can vouch for the fact that IBS can and does cause back pain, fluctuating constipation and diarrhoea, gas and bloating and can be driven by anxiety, my best friend has all of these plus depression!


I wonder if you could work on the IBS diagnosis and at the same time encourage your GP to look again and do further other tests? Would a CT scan convince you? I can't see that improving your diet, reducing stress levels with exercise and CBT techniques and identifying any food triggers could do any harm or make any PC symptoms worse and it may give you a focus or even make you feel better until you get your scan.


M

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Hi marmalade, I think I have pancreatic cancer because any other causes of my symptoms have been pretty much ruled out(notably, colon cancer, as described in the original post) . The loss of hunger(have not felt hungry since early august) is particularly worrying for me and I cant help but relate this to some kind of systemic malignancy.


And it matters because I did actually lose weight(a cancer redflag) while I was away from home September-december, since being at home I have indeed gained weight but only out of binge eating, never out of 'hunger'. And besides, it simply isn't normal for me to not feel hungry, I typically get hungry very often. People tell try to tell me that gaining weight while you have cancer simply isn't possible, but many studies in fact show that it is not atypical behaviour to gain weight leading up to a diagnosis (as you try to strengthen yourself up, regardless of 'hunger')


i suppose my symptoms are always going to seem less severe when I type them online and you read them compared to how they actually are for me. This is something I have found to be the case in real life, I tell people how I feel and they don't think much of it because they're not actually going through it. I suppose this is partly why I have had such trouble making my GP take me seriously. But honestly, loss of appetite is not all of it, my bowel habits have completely changed and I get bad pains at times. All in all though, I'm honestly not some kind of hypochondriac and made this thread only after months of genuine, thought out concern. If I don't have pancreatic cancer then I have some other weird condition that is mimicking it very closely, but doctors are yet to pinpoint it.


edit: You speak of a CT scan, yes this would certainly convince me, that's exactly what I have been wanting for a while now

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I am on my phone which I am not very good with. I was thinking about this last night and there are several reasons why this is not red flag for cancer as well. You can go two ways when stressed and lots of people over eat. Myself - I starve and a not eat a morsel. I have even been given build up shakes by the dr and passed out before. This has improved with age but was real problem for me. The other thing that does not compute as red flag for early pc, which is what this would be in relative terms, is your morning back pain. For most people I know the pain is worse in the eve, especially after the evening meal onwards. This will sound really daft but after my dad was diagnosed I got to point of having odd paid in my back in the morning just where my dad's was. I was going to go to Dr as convinced myself it was a genetic link to pc. My more rational other half just changed our mattress that was old and pain went. I am not being flippant... that really happened. Do not underestimate the power of the mind on your digestive system either. X

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Hi Longseason I am so sorry you are no further on in your journey to have a diagnosis after all this time. I don't know if this will be of any comfort to you but my husband was diagnosed on 21st Nov 16. Up to one week before he was perfectly fit and healthy as we all thought. He turned bright yellow within three days and went to our GP who said he would arrange an ultrasound. Two days later on the Saturday he seemed so Ill that being the weekend my son and I took him to our local A&E dept. He was admitted and given an ultrasound on the Sunday and was told on the Monday morning he had PC with liver mets. Since that day 6 weeks ago he has just deteriorated before our eyes at an astonishing rate. he lost his appetite not just that he is eating less , he just stopped eating because he can't.. I am not anywhere near an expert on PC but I think that until the symptoms present themselves most people feel generally healthy and then out of the blue something triggers the diagnosis. We have been so lucky apart from coming up against a few professionals who had no compassion about the manner in which they imparted news to my husband I have nothing but praise for our GP's and hospital staff and this forum which has come to be my main go to for support. I think what I am trying to say is that PC can be so aggressive that once the symptoms show themselves there can be no doubts about the diagnosis. I know everyone is different and all sorts of factors are involved such as what stage the PC is at also your age and fitness as to what treatment can be given but I think given you have had these symptoms since August that without treatment the disease would have progressed to a stage where there would be no doubt that you have PC. I hope this may allay your fears just a little and maybe take Marmalades advice and approach a new GP who is willing to get to the bottom of your symptoms. Wishing you all the best in your continuing search for answers and a diagnoses

Elaine.

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Ask PCUK for my yahoo e-mail address. I have another suggestion to help you get a scan but not for here.

Edited by Dandygal76
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Hello

Just a very quick response as I have to dash out. If you've been pushing for a CT scan and this would alleviate this awful anxiety and fear could you push your G.P to refer you or if you are financially able could you pay for one yourself?

Ruth

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Hi Elaine I hear what you say about being ill since August is perhaps slower progression that one most would most likely expect, but I have still read stories of people online being ill for a long time before diagnosis. :/


And Hi Ruthus I went to my gp again today for one final attempt but she still wouldn't agree to a ct scan. It seems that in some ways the more worried you are, the more it works against you! I can no longer afford private am considering going A & E some point soon. I'll probably give NHS direct a call first and see what they advise.

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Just to let you know, there are 3 main types of IBS. IBS-D, IBS-C and an IBS which is a mixture of both. IBS-C can cause constipation and back pain. Most people assume IBS is all about rushing to the loo and stomach and bowel spasms, it's not. People just tend to talk more about the IBS that causes diarrhoea as it tends to impact on those individuals more on a daily basis thus they're more likely to seek help vocally. I know I never spoke about my constipation issues as it wasn't really causing me much issues elsewhere in my life. I only began seeking help when it all began to go the other way as it was more concerning.


Your large bowel runs right round the perimeter of your abdominal cavity and the bottom is situated close to a lot of nerves. I remember before i got my constipation issues under control (I'm on codeine for a long term back issue, but always been down the right), I began to suffer from left sided back pain. It was because my bowel was packed.


I also remember a nurse on here taking the time out to explain that trapped wind, a symptom that usually goes hand in hand with constipation can also cause a lot of pain. My GI consultant backed this up and also added it can cause pain both front and back. Upper left, upper right, down the sides and in the middle. If your large bowel is struggling, then it begins to manifest in the small bowels too. Things begin to slow down due to the lack of movement elsewhere. Your body eventually attempts to rid itself of those stools by bypassing the blockage and this means diarrhoea because that's the only thing that can get past most partial blockages.

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Some of my symptoms do resemble ibs yes but appetite loss not so much.


The offical guidelines for pancan are

'Consider an urgent direct access CT scan (to be performed within 2 weeks), or an urgent ultrasound scan if CT is not available, to assess for pancreatic cancer in people aged 60 and over with weight loss and any of the following:

diarrhoea

back pain

abdominal pain

nausea

vomiting

constipation'


I initially did lose weight due to the loss of appetite, I've since gained that back and pretty much maintained due to a conscious effort to eat(this has probably worked against me..). I feel like if I was older I would definitely have had a CT scan by now, and it seems like a bit of a risk to me to deprive someone of a CT scan just because of their age, as I'm still human and so it's still going to present itself the same. I realise I have had an ultrasound but apparently that's not very good at picking up tumours that aren't on the head of the pancreas (which can probably be ruled out for me anyway due to lack of jaundice)

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I know you said in your OP that you had seen a GI doctor privately for the colonscopy, but have you ever been referred to an NHS one through your GP? If not, then that is something they have to allow if you insist on it. Once there, see what s/he has to say. The most you're likely to get from an A&E appointment is an xray or another US scan. CT scans in an A&E environment are usually reserved for emergencies e.g. car crash victims, head injuries and the likes. CT scans are usually last resort due to the expense involved.


Unless you walked into A&E vomiting blood, been referred there as an emergency from your GP, they took bloods and something serious showed up or you had a yellow tinge to your skin/eyes, I highly doubt you'd get one. They'd tell you to get back in touch with your GP. I simply wouldn't waste your time on a 8-12 hour wait just to get told that.

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Would the wait for an NHS likely be a couple of months or so?


I really should have got a CT scan from the private doctor before my colonoscopy and when I could have afforded it, at least I'd know know for sure either way by now but the possibility of pancan or anything else was overlooked

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Well a family member has learnt how this is affecting me and has agreed to lend me the money for a CT scan. I'm booked in for next thursday. I suppose a good result will be nothing flagging up and whatever is wrong with me remaining a mystery, but remembering how I have felt at times over the last few months and considering the range of my symptoms this seems very unlikely. Not sure if it's paranoia or not but today I have even realized that I may have diabates like symptoms(dry mouth, thirst etc), a condition that pancan often induces.

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I really do hope that the CT puts your mind at rest about the pancreatic cancer...I tend to agree with the others that it really doesn't sound like its that, but we're not medical professionals, so we are only going off what we have lived with. My husband had few symptoms, no pain or anything, he just had pale stools, which luckily our GP recognised as a sign of pancreatic cancer and sent him for an ultrasound straight away, which showed something on the pancreas, so we were straight to a CT and to the Heptobilliary Consultant...within 3 weeks he was severely jaundiced and very poorly, had a diagnosis and a stent fitted, with chemo starting within a few weeks.


Good luck with the scan


Vx

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Thank you veema, my symptoms last few days have been weird and worrying though. I seem to be getting nerve like pain across my upper back and around my shoulders. It's very infrequent but happens nonetheless. I'm almost convinced this is cancer referred cancer pain. I also seem to get pain in my liver area at times. I had a clean ultrasound a month ago but I'm not sure it picks up liver mets very well. At the same time I the lower back/rectal feeling of pressure has subsided, which is strange because I'd had that for months and you'd expect cancer symptoms to progress. At the same though, the mysterious nature of my symptoms almost points me further towards pancan


My grandfather has told me that a CT scan doesn't always pick up pancreatic cancer, which is perhaps true but I'm confident that SOMETHING will show up if something is wrong with me, either in my pancreas or elsewhere, hopefully people here will be bale to back up on this. From my point of view I'm really praying for a miracle and feel like something is almost definitely going to show up, though who knows. Stranger things have happened. While my family and friends are convinced there is nothing wrong with me, they just can't know my body like I can

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Veema wrote:

> What will you do if the CT scan is clear?

I'm not really sure. I suppose I'd just be living with a mystery illness. I know the gastrointestinal system is poorly understood and can play up at times, i just think what's I'm experiencing goes beyond that as rational explanation.

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I am quite certain if you have pancreatic cancer, especially to the extent you think you have it, that a CT scan will most certainly pick it up. I have NEVER seen a case where it cannot be detected and followed up via a CT scan. So, please get that thought of your head right now otherwise you will spend your whole life in misery.

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DG is absolutely right Longseason. It's not a miracle you should be praying my friend but a CT scan at the very least. If a clear scan doesn't reassure you, then perhaps you might find some relief in addressing your health anxieties with your doctor? This is clearly very distressing for you and I do think your GP should be helping you in this regard. Xx

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