A forum for any other issues around pancreatic cancer

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Matthewr73
Posts: 4
Joined: Tue Oct 31, 2017 11:25 pm

Not feeling well at all and very worried.

Postby Matthewr73 » Sat Dec 02, 2017 9:35 pm

I will try and keep this as short as possible and hope you don't mind me being here!

I'm 44 years old from East Sussex. In Oct 2016

In Jan started with upper stomach pain and right flank pain and still have it.

In March i started loosing weight and i've gone from 22 to 14 stone.

In March nausea 24/7 started and still have.

In March upper left side back and shoulder pain started and still have.

In April dizzy spells started which have now progressed to constant 24/7 for 18 weeks solid now.

In April foul taste in mouth occasionally which is getting more constant and no matter what i do i can't get rid of it.

In April stools turned light colour and urine dark and still the same.

Finally referred to gastro in June under the 2 week wait system.

Test carried out by GP and Consultant and many that i've had to push and hassle for......
Abdo Ultrasound x2
CT with iv conteast of chest, abdo and pelvis.
Blood tests including tumour markers, amylaise, lypaise and the basic normal blood tests.
Chest xray
ECG x2.

I suppose my question is, is this enough tests? I've found the NHS a nightmare to be honest as i've had to push and hassle for everything. I've never ever felt so ill and i've not worked since March. I have all these symptoms non stop and feel like i've been hit by a bus. I've told all these medical professionals how ill i'm feeling and nobody seems to care. I thought it might be gallbladder related but my ultrasounds, CT and bloods have all been normal and the Consultant said he assures me it's not and if it's not everything else comes back to pancreas issues?

Thanks for reading and any advice would be lovely!

Matt

Matthewr73
Posts: 4
Joined: Tue Oct 31, 2017 11:25 pm

Re: Not feeling well at all and very worried.

Postby Matthewr73 » Sat Dec 02, 2017 9:40 pm

Sorry it should start, in Oct16 i started feeling really unwell.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Not feeling well at all and very worried.

Postby Justamo » Sat Dec 02, 2017 9:53 pm

Hi Matthew

Any signs of diabetes ?

Best wishes
Mo

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

Re: Not feeling well at all and very worried.

Postby Didge » Sat Dec 02, 2017 11:32 pm

Hi Matt, if you’ve had a CT scan of your pancreas which I assume was included then PC will have been ruled out. The tumour marker test is for CA19-9 when PC is suspected although it is also sometimes raised in other cancers. Not everyone with PC has raised levels though. In a way as you’ve been ill for so long but are still here, that should reassure you that it’s not that. So as long as you’ve had a CT scan of your pancreas and that is clear you should look for answers elsewhere. Your symptoms are not quite right for PC either although of course we’re not medics here! I hope you find out what it is as it sounds thoroughly miserable.

Matthewr73
Posts: 4
Joined: Tue Oct 31, 2017 11:25 pm

Re: Not feeling well at all and very worried.

Postby Matthewr73 » Sun Dec 03, 2017 12:15 am

Justamo wrote:
> Hi Matthew
>
> Any signs of diabetes ?
>
> Best wishes
> Mo


Hi Mo, No sign of diabetes. I had my bloods taken for it in Oct16, March17, May17, June17, Aug17 and Oct17 and all normal.

Thanks
Matt

Matthewr73
Posts: 4
Joined: Tue Oct 31, 2017 11:25 pm

Re: Not feeling well at all and very worried.

Postby Matthewr73 » Sun Dec 03, 2017 12:24 am

Didge wrote:
> Hi Matt, if you’ve had a CT scan of your pancreas which I assume was
> included then PC will have been ruled out. The tumour marker test is for
> CA19-9 when PC is suspected although it is also sometimes raised in other
> cancers. Not everyone with PC has raised levels though. In a way as you’ve
> been ill for so long but are still here, that should reassure you that it’s
> not that. So as long as you’ve had a CT scan of your pancreas and that is
> clear you should look for answers elsewhere. Your symptoms are not quite
> right for PC either although of course we’re not medics here! I hope you
> find out what it is as it sounds thoroughly miserable.

Hi Didge, Thanks so much for replying. It is miserable and i seem to be feeling worse and worse. I've been feeling so bad i've only been out of my flat about 5 times for tests and GP appts since the end of July. My partner saw a poster for PC and many symptoms seemed to fit. Yes the tumour marker was CA19-9 and the other was CA125 or 150 something but i can't remember exactly. The CT wasn't pancreas specific but it mentions my pancreas as normal in the report.

Thanks
Matt

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

Re: Not feeling well at all and very worried.

Postby BlacJAC » Fri Dec 08, 2017 10:58 pm

Hi, I hope you don't mind me replying. From my own personal experience, CT's, US and bloods all gave a picture perfect reading etc for my gallbladder. However, I needed a specific scan for the actual function and I think it's called a HIDA scan (could be wrong as it was so long ago). That was the only test that I had that showed my GB wasn't doing its job properly.

CT's etc only show growths, stones and physical abnormalities as far as I'm aware. They don't actually show it functioning.