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smilinggirl

NET (Carcinoid Tumours)

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smilinggirl

Does anyone have experience in Neuroendocrine Tumours? I was diagnosed yesterday. Surgery has removed the tumour and the General Surgeon said no further treatment required. I am not comfortable with this so plans are in place to book in for more testing. But I was wondering if anyone has come across it. I represent 2% of the worlds population to have a second appendix called a Meckel’s Diverticulum and 0.2% of those who develop a tumour in it. So it is very rare.

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little lion

Hope you’re feeling OK. As a nurse, I have cared for patients with neuroendocrine tumours who were having immunotherapy (interferon). Some felt it was hard getting enough social support because it was such a rare thing. 

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Not Escapin Xmas

I've likely got it. Been having horror night sweats for months and finally saw a specialist. Confirmed by blood test. Next step is PET scan next week or week after to try to find it. Surgery does seem to be the preferred treatment if at all possible.

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smilinggirl
1 hour ago, Not Escapin Xmas said:

I've likely got it. Been having horror night sweats for months and finally saw a specialist. Confirmed by blood test. Next step is PET scan next week or week after to try to find it. Surgery does seem to be the preferred treatment if at all possible.

Good luck with your PET scan. I need to find a new GP first but living in Melb has suddenly made medical appointments tricky again. I had night sweats too but blamed it on peri menopause which I blame everything on!

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MooGuru

Sorry you're going through this Not Escapin Xmas and Smilinggirl.

A friend's mother was diagnosed with a NET about 2 years ago. She had surgery then 3 monthly reviews for a year I believe. As far as I know she hasn't had any chemo, immunotherapy or radiation but they were confident they'd found and removed it all. I believe it was caught very early in her case. She did have follow up bloods and PET scan. Can't remember if that occurred post surgery or at the three month mark. 

Good luck and fingers crossed for you.

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Not Escapin Xmas

Im still in the ‘can’t believe this is actually happening’ phase. I tell you what though, if it does turn out to be as simple as if the damn thing and remove it I will be a very happy woman.

i just knew the night sweats weren’t menopause. instead I blamed them on the autoimmune disease I have. Lol! It was actually someone here on EB that gave me the shove I needed to go to the doc about it. I would love to say thank you but I can find the post - the search function is a bit rubbish.

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