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.

It’s an investigation OP . I really would not assume this was possible cancer

Unfortunately today she has explained that she believes my symptoms are caused by carcinoid syndrome

That seems very premature before investigations have begun.
What tests has she booked?

She believes it’s possible that it’s caused by that. With no investigation yet complete she cannot say any more than that.

I have had an endless amount of testing with other doctors before I was referred to her. I have been very, very unwell. I had a lot of bloods done with her and then went for my follow up today where she has requested a 24 hour urine and a specific blood test.
i have the classic carcinoid triad, unspeakable diarrhoea, horrific flushing and a pounding heart. Along side many many other other symptoms.

It was simply not professional of her to suggest a possible diagnosis before diagnostic investigations

are you on the 2 week pathway?

unspeakable diarrhoea, horrific flushing and a pounding heart.

sounds like peri to me

I asked her to be honest because I’ve felt incredibly dismissed on this journey to find out what’s wrong with me, I wanted her to tell me and asked her to.
I am not on the nhs pathway, I’ve had all this done privately

We discussed this, it doesn’t seem so. I have very regular periods and my hormone panels came back very normal if that can mean anything

As I understand it, it's not a great diagnosis, but not a terrible one either. Did she give you an idea of how serious it is?

I know it's very hard to do, but it's worth trying to hope for the best. I've been in a very similar position over the last couple of months - my initial investigations suggested pancreatic cancer, which of course is terrifying, but the outcome has been a benign tumour. It's still been a terrible slog and at times it's been very hard not to fall into a hole of despair but the only good bit of advice any has given me is not to borrow tomorrow's troubles - tackle each task as it comes.

everything sounds like peri on MN. The consultant is doing the appropriate thing by looking for the rare but serious problems first. And of course they're correct to explain what it is they're wanting to exclude.

True - potential diagnosis.

I will do the 24 hour urine collection on Sunday and take it with me on Monday for my fasting blood test. However the results can take up to 6 weeks to come back

Yes no diagnosis obviously however I have felt like I am dying and I’m not dramatic. I genuinely have zero quality of life and have been chronically unwell for years

I was at breaking point today, I just needed someone to be honest with me. I asked her to tell me straight what we are doing next and why because I just can’t live like this forever without knowing

Not knowing is really awful.

Have you had a CT at any point?

Op, if it helps any, I was on a 2ww cancer pathway and with the nhs too. I had the fear of god that something was seriously wrong, ticked all of the boxes for cancer, saw suspected cancer on jy medical record. It ended up being something else!! So please please don't overthink it. The only part of what happened to me that was actually dangerous was the stress!

I’ve recently had a pelvic mri, upper abdomen ultrasound (2 years ago) and colonoscopy/endoscopy (2 years ago)

Was anything found on those? NETS would normally involve a tumour of some sort, I think?

Sounds like anxiety to me.

Hopefully all is well. Try not to spiral. Many people, myself included, have been tested for the possibility of cancer. The majority, myself included, do and did not have it.

Um, doesn't everyone discuss a possible ddx list before they do tests for anything??