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.

Do you have any plans this weekend to preoccupy you? Otherwise I sense you will just spiral

How much weight have you lost?

My sweats are also debilitating and come in waves. There were 3 days last week where I had to change my clothes multiple times a day, today I was actually drenched with sweat 🤢 yes I’ve had all that done. Heamatology and endocrinology have both checked my AM cortisol levels and they were normal! (300). So they also suspected they you had a NET? If you don’t mind sharing what did it end up being. I am so done 😭

I lost 2 stone in around 5 weeks when the diarrhoea was at its worst, had gastro testing was all normal apart from a hernia. Once the weight came back on between episodes I’ve gone the opposite way now and gain like crazy.

Probably just scream into a pillow 😂 only joking, my 2 little ones keep me very busy which I’m grateful (and exhausted) for x

Thank you. I’m so glad he is okay x

What’s scary is they can take up to 7 years to diagnose due to vague symptoms. I’m already 3 years into symptoms and worsening rapidly. I really hope it isn’t :(

You have gained a lot of weight despite same diet and horrific diarrhoea?

Yes, when I’m having diarrhea episodes the weight gain stops then starts again when it dies down again. I’m actually eating not a lot at all, I’m never hungry anymore. Nothing makes sense at all

I should add excessive weight gain can also happen with nets, unfortunately:(

Are you currently experiencing awful diarrhoea or is it a stop-start condition?

Excessive weight gain with cancer is very much not the norm. So take comfort from that

My aunt had a neuroendocrine tumour. It did take a while to get diagnosed - because rare and not always thought of.

She got treatment and it didn't progress. Eventually died in her old age, not due to the tumour.

I know how awful it can feel while waiting, OP. I hope that things work out well for you.

Comes in waves. I’d say a week off/on, had all gastro testing, allergy testing etc but the sweating and flushing is 24/7 now

If the diarrhoea is stop start can you identify any triggers?

when you say you have gained excessive weight… how much?

no triggers at all everything is completely random. I’ve worked with gastroenterologists, dietitians, allergy specialists. Nothing ever came up. Starting weight was 11 stone, then down to 9, now I am 14. Endocrinology first thought Cushings but it doesn’t seem to be. She said the trio of symptoms is more classic nets paired with my other symptoms. She has also had patients who have pretended with a crazy initial weight loss then insane weight gain

Over what time period have you put on 5 stone with no change at all in your diet and very frequent horrific diarrhoea?

I know you probably don't want random suggestions of other diagnoses but have you been tested for coeliac disease?

Op says no triggers
and it would be highly unusual for someone pre coeliac diagnosis to have put on 5 stone

I assume hyperthyroidism has been excluded?

Very very unlikely to be carcinoid triad if the diarrhoea comes and goes. It constant and never letting up.

I suspect the test is to rule it out

Severe weight loss is inevitable because the diarrhoea is so violent and complete

Bet I would.