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Marmalade

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Marmalade » Wed Dec 07, 2016 10:13 pm

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

M

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby BlacJAC » Thu Dec 08, 2016 11:27 am

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.

Marmalade

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Marmalade » Thu Dec 08, 2016 9:16 pm

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

Marmalade x

longseason
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Fri Dec 09, 2016 1:11 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Dandygal76 » Fri Dec 09, 2016 1:19 pm

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
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Fri Dec 09, 2016 1:30 pm

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

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Dandygal76 » Fri Dec 09, 2016 2:11 pm

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
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby BlacJAC » Fri Dec 09, 2016 7:14 pm

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
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Mon Dec 12, 2016 6:55 pm

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
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Mon Dec 19, 2016 5:13 pm

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.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Didge » Mon Dec 19, 2016 10:28 pm

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!

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby BlacJAC » Tue Dec 20, 2016 1:03 pm

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.

longseason
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Tue Dec 20, 2016 2:48 pm

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.

longseason
Posts: 32
Joined: Tue Dec 06, 2016 5:00 pm

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby longseason » Sun Jan 08, 2017 4:27 pm

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.

Marmalade

Re: 25 year old male. Imminent diagnosis, I am almost certai

Postby Marmalade » Sun Jan 08, 2017 5:06 pm

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