My convoluted diagnostic thread

[PCUK Nurse Jeni]

Great news Blacjac!

Thanks for coming back on to update us all, and to "close" your particular journey for now.

It has been a pleasure and pleased it all turned out well in the end.

Kr,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[sandraW]

Great news Blacjac, good that they got that polyp as soon as they did, which as you say without you pushing would have caused problems in the end.

Hopefully you will now start to feel better as you will no longer be worrying take care sandrax xx

[Didge]

Christmas is only a few weeks away. Have a great one! X

[Dandygal76]

I am glad you are feeling stronger BlacJac. I am sure if we had all convinced ourselves we had PC then we would be the same. Stick to your new healthy habits. I think good healthy living is the key on the whole. x

[BlacJAC]

Hi, been a while and thought I'd give an update. The 2 years since all this began has kinda been 2 of the unhappiest years of my life, but always used the mantra "It could have been worse" as witnessed by the stories strewn all over this site.

Anyway, 3 weeks ago after an argument with my wife one night I suddenly became hot. Like virally hot, but felt fine. Never worried about it because I thought it was either stress, a virus or it would just be away the next day. Needless to say I was sat for the first 2 weeks with a wet flannel in front of a fan. Simply felt i was burning up. Again, never ever felt virally and my temp was always normal.

During the 2nd week I contacted my gp as I had come to the realisation that this may actually be flushing, even though I wasn't going bright red, nor sweating. After a whole battery of bloods last week everything including my thyroid all came back normal.

Being the raging hypochondriac that I was/am, I decided to do what I promised never to do again - GOOGLE. Really wish I hadn't but in a way glad that I did. Dry flushing in males is never a good thing and I think this is related to my GI issues I have suffered from over the last 2 years. Jumping the gun maybe, but all my symptoms point to carcinoid syndrome.

Carcinoid tumours (or you may recognise them better as neuroendocrine tumours) are notoriously difficult to find. My GP is refusing all further investigations due to all the tests I had last time out and because all my bloods were picture perfect and she's putting it down to anxiety. In a way I don't really blame her, but something I have never ever been checked for other than my thyroid is hormones. Reading up on neuroendocrine tumours something that has been quite striking is the amount of people who have went through the exact same journey as myself, tons of normal scans, bloods etc only to find out later after specific blood/urine tests or even the gold standard pet scan (not the normal pet scan) that there was indeed an issue is amazing. More often than not, it's how this pans out.

Would one of the nurses please be kind enough to give me some advice on how best to approach to my GP without her thinking I'm being some raging hypochondriac, please?

Dry flushing in guys is a red flag symptom, yet according to her, it doesn't warrant further investigation as my bloods are fine. It's not thyroid or diabetes so she's not interested. I really loathe how gp's nowadays use the "if it sounds like hoofs, it must be a horse" approach.

[PCUK Nurse Jeni]

Hello BlacJac,

Thanks for your post.

Sorry to hear that you are experiencing some symptoms again.

I will email you directly regarding other tests which might help.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[BlacJAC]

Hi Jeni. Thank you very much for your email that went above and beyond what I expected a PC nurse to do for someone that remains undiagnosed.

After talking to my GP today and after showing her your email she has reluctantly referred me on to an oncologist so she can "put my mind at rest". She stated had i had pancreatic cancer I'd be a helluva lot worse than I currently am or dead after 2 years, especially without treatment and my bloods would be showing something by now. Something I think we both agreed on. However, it's not how most NET tumours work or progress.

I'm not saying if the worst case scenario pans out that it's necessarily in my pancreas, but at least now i may get the specific blood and urine tests. She also said most of those tests can't be done in GP offices. No idea why, but you'll know the reasons behind why they have to be done in a hospital. Whilst still slightly stressed with anxiety, I am actually quite clam about it all. I've lived a thoroughly miserable 2 years with a very limited diet; Can't eat out, can't order take aways, going on holidays are a major embarrassment as I'm that guy that has to bring his own food and a host of other hindrances. I don't know anyone with IBS who lives my existence. Most can at least indulge even if it's for 1 night. Thought i'd never hear myself say this, but I'd rather have a good 2-8 years than another 30 odd years of the last 2 years.

I'm not saying this through depression nor just saying this for effect, it really is the truth. Of course I'd rather be care free with my health in tact, but I'm old enough and hopefully wise enough to know life throws some of us a curve ball from time to time. My kids are healthy and that's ultimately all that matters to me now.

[PCUK Nurse Jeni]

Hello BlacJAC,

That's good news to hear that at least these other issues are being checked out. I am sure it has put your mind at rest.

And that's no problem Blacjac - I might still get in touch with the NET foundation though, as they may have more information for you.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[BlacJAC]

Hi folks.

I saw the oncologist last Friday and it was a complete and utter waste of time. Sat for an hour to be taken, then once i did see the oncologist I was instantly brushed off with it's "generalised anxiety". My "fight or flight mechanism misfiring" This is going to sound almost laughable, but the testing began and ended at my testicles being examined.

The entire appointment lasted 5mins.

Who needs further investigations, scans, bloods etc when some oncologists possess the super human ability to give a diagnosis like that straight off the bat. If anyone is needing such an oncologist, then I can pass their information on. Unbelievable. Even my GP was scratching her head and didn't initially believe the consultation panned out in this manner until she read the report.