Neuroendocrine tumours

Neuroendocrine tumours are a rare type of cancer that affects the neuroendocrine system, which produces hormones. This group is for anyone affected by neuroendocrine tumours to come together, share experiences and ask questions.


Posted by
My mum has pancreas and liver neuroendocrine (insulinoma) she was admitted to hospital on Friday with extreme pain and we found out yesterday that it has spread to her lungs since the last scan in October. Going to QE today to talk to consultant but has anyone had any experiences of this type and also further growth? I would like to know what to expect no matter how bad or good? Also has anyone had to tell young children about cancer and how did they do it? Any help/guidance welcome
Posted by

Hi and sorry to hear about your mum.

Sorry I dont know much about pancreas and liver neuroendocrine - but I can help with how to talk to children about cancer.

I recommend phong the Macmillan helplin and ask them to send you this booklet::

The Macmillan helpline is free and open Monday to Friday, 9am-8pm) - 0808 808 00 00

Talking to children when an adult has cancer

This is an updated version of the booklet providing support and advice to anyone wondering how to cope with children when an adult has cancer. This guide covers questions children might ask, their potential reactions and information about sources of additional support.


best wishes


Posted by

Hi Emma,

I am sorry to hear about your mum,

Firstly, is your mum under a specialist Nuroendocrine treatment centre?

What kind of scans has she had? and treatment plans have they offered her?

The thing with this cancer is every person is different, and every tumour behaves different

My mum was diagnosed with Nurodendocrone cancer of the mesentaries, and multiple liver metastities ( sorry about the spellings!) She has been referred to the Churchill hospital in Oxford as my local hospital didn't know enough about the disease. She has all sorts of scan completed and they decided not to start treatment until the new year - presently still waiting.

I cant really comment too much without knowing what care she has had so far

please feel free to message me, this cancer is rare and there is very little about,


Vanessa xx

Posted by

My Mum was diagnosed with neuro endocrine in Aug 2009 (Pancreas primary and liver secondary) she has had very little trouble until early January when some abdominal pain started. She has just been told that her cancer has spread to the lungs and stomach in the 3 onths since her last scan 3 months ago. My Mum's consultant is at the QE in Birmigham and she has had excellent care to date.

Over the last week the pain has increased 10 fold and she is now on a morphonie pump. The hospital are talking about her coming  home on Friday with pallative care. But I am concerned how my Dad will cope.


There is so little information available about this type of cancer that it is hard to know where to turn for any guidance.