Possible neuroendocrine cancer… handhold

[HelloAutumn99]

Just need to vent
32 years old, 2 young children.
Not felt right since I had my daughter 3 years ago.
After 12 different referrals for different doctors I was sent to endocrinology. I had my follow up today after my initial tests and she wants to investigate the possibility of me having a NETS cancer.
My world has fell apart.

I can not stress this enough, the symptoms I am experiencing can physically not be caused by anxiety to the severity that I am experiencing, I am not anxious, of course I am worried today but I am not anxious and already been seen by the right professionals to prove this!

Yes I’ve had alot of testing… because I have been really unwell.

i saw rheumatology last and he was quite concerned, he did a refferal to endocrinology and that’s how I ended up seeing a private endocrinologist, up to this point everything has been on the nhs and I’ve been passed around for 3 years. Some things found along the way but no solutions

You've had such a rough time of it, you must be exhausted. The uncertainty is incredibly draining. It sounds like the endocrinologist has a plan which is great. That doesn't mean she's right, however. The possibility of a NETS diagnosis is scary but you should be prepared for even more vagueness, unfortunately.

It's a shame you haven't had a more recent, more extensive MRI.

He was concerned about an endocrinology or hormone issue mimicing/overlapping a rheumatology issue after he did his testing. I actually was treated by him for gout (again I am 32 and I don’t drink or anything so it was very random, just one of the random
things that has been happening to me) he also witnessed one of the episodes of extreme full body flushing, palpitations, extremely high blood pressure and diarrhoea (obviously he didn’t actually witness that but haha) and he decided to refer me to endocrinology. At this point I was at breaking point and went private.

OP a year ago exactly I was diagnosed with aggressive form of cancer out of the blue. I assumed I'd be dead by Christmas because my DF had the same illness and that's what happened to him. I felt as if my life was disintegrating. Fortunately it was treatable and I'm in remission.

Try and take things one day at a time, don't Google, stay in the moment and try not to let your thoughts spiral. So many illnesses, including cancer can be treated these days.

If you can get a diagnosis (even if it's bad news) you might find some relief in knowing what's wrong and getting a treatment plan in place. That certainly helped me. My medical team deal with this stuff every day and were very matter of fact about how I could be helped. it made my situation feel manageable rather than catastrophic.

yes, it is completely normal practice to discuss the differential or at least what you want to exclude before you start putting everything down to something less worrying.... not least because most people will just go straight to google/MN to look for answers when they get the unusual looking massive container to do a 24hr urine in and scare themselves half to death doomscrolling.

Yes exactly that, being given a huge brown container and a blood form that said CARCINOID??? on I would of rather been explained to than sat worrying

Thanks for taking the time to reply, ovbiously I haven’t been diagnosed with anything but I am just exhausted, desperate for an answer despite not really wanting to know at the same time. I’m so glad your okay xxx

@Notgonnatalkabouttheweather you seem to be hellbent on trying to disprove every response the OP has came back with, what’s the deal? OP is clearly frightened, stop badgering her and show a little compassion or come off her thread and leave well alone.

This is more just a message of support. I was tested for this a year or so ago, it does take time for the urine collection and bloods to come back sadly even when done privately I’m sorry to say and of course the wait is very hard. I did not have an endocrine tumour but I do have a serious chronic endocrine disorder which is challenging to live with but I’m mindful it could be worse. I did have very similar symptoms to the ones you are describing and my Endo was honest about her concerns and the need for testing. Also to add (apologies if you are already aware) bur before you do the urine and blood tests I would advise you check out the dietary implications of some foods on the results, please check but I think things like certain nuts and fruits can artificially change levels in the blood/urine which could add delay or cause issues with accurate diagnosis. It easy to say but NET are rare. I hope you get good news and also that you get answers/diagnosis so you can start to feel better. Good Luck.

Hi OP - sorry for what you’re going through, I hope you have support trying to stay stable while waiting for a diagnosis. That’s a battle in itself. I have no experience of any of what you’ve described except for this episode, which sounds like a cross between anaphylaxis (full body shut down of various systems eg respiratory, digestive, endocrine etc) and a seizure (palpitations, full body shut down). I’ve had experience of both of these things, as it happens triggered by pregnancy, but not at the same time. I have found my triggers for both epilepsy and allergy and love a full and healthy life. All to say, your diagnosis might not be a single thing (likely not given how long it’s been going on and how many people you’ve seen); it could be two or more things, each one kicking off the other in a horrible never ending sequence, triggered by your endocrine system. You wouldn’t be the first.

Good luck. It’s awful waiting for test results for suspected cancer of anything. Be gentle on yourself.

Thank you ❤️

Thank you so much, I hope you’re okay as can be. Omg the symptoms are horrific. At one point I lost 2 stone in around 6 weeks from
the relentless diarrhea, I was skeletal. I’ve luckily between episodes been able to gain some back. I feel like I’m dying every day 😭 x

fwiw, have seen far more people be tested than come back positive even with the full house of symptoms (not my specialty but over the years have seen a few customers where we've thought about it). The turnaround is longer than for a standard urine test but hopefully won't be too long. Hope things turn out well.

Why does any health condition a woman has have to be ‘anxiety’? I bet you wouldn’t suggest that to a man

😂😂😂

I’m so sorry - you truly are having an awful time. I had horrendous sweats, palpitations, weight loss, and it was completely all consuming/overwhelming and I felt ill, scared and incapacitated with it, so I can empathise with the misery of feeling just awful. I know that wait and uncertainty is incredibly hard and we are all conditioned to fear the worst - thats human nature and its very hard to not think those thoughts as fundamentally you know something just isn’t right. Just out of interest has the Endo checked your early morning cortisol levels for Addisons disease?

I know its hard but try and focus on what you do know at the moment; namely that you are hopefully under the care of a good clinician/consultant who has accepted your concerns/symptoms and treated them with the seriousness they warrant, and is going to help you to get a diagnosis and then a plan and hopefully you will soon start to get the treatment you need to feel much better. Good luck with it all, be kind to yourself.

I came to make a very similar comment. I think its only about 7-8% of people put on to the pathways who end up being diagnosed with cancer.

I know its easier said than done but try not to worry too much OP.

My teenage son did have a neuroendocrine tumour. He had an excellent prognosis. He was told that some day that it will just be an interesting footnote in his medical file. That was 8 years ago.