Supporting the

Neuroendocrine Cancer Community

My name is Janet, I am 66 years young and have been diagnosed with NET’s in my bowel, liver and pancreas, after lots of tests and scans in 2020, I finally got diagnosed October 2020 and started on the Lanreotide injections every four weeks, so I have just had my fourth one. I am coping fairly well but do have days (especially just after the injection) when I don’t feel well at all.

My partner Chris is supportive as are my family but they don’t really get it as they have never heard of it before, so I try not to bring subject up too often. I know Its early days for me, but I have had tummy problems all my life as I was born with twisted stomach so been in and out of hospital quite a lot over the years.

I sometimes can’t quite believe I have got this diagnosis!! But I have and it was nice to read other people’s stories to know that I am not alone with it.
I go to Queens Medical centre in Nottingham for my treatment and they all seem a very nice team there, which is nice and reassuring.

I hope by me telling my story I may help someone else.
Thank you.


Around 36,000 people are affected by Neuroendocrine Cancer (NETs) in the UK, with over 5,000 people newly diagnosed each year. That is more than 13 people a day. For many the first time they will have heard about Neuroendocrine Cancer will be the day they receive their diagnosis.

Faces of NCUK is here for you to be part of a huge community of like minded people, and to share your own thoughts and feelings about Neuroendocrine Cancer. Whoever you are – a Neuroendocrine Cancer patient, a supporter, a friend, healthcare professional or a loved one – you have the power to take action and make your voice count.

By talking about your experiences, you can help us tell powerful stories that raise awareness and create a wider and deeper conversation about Neuroendocrine Cancer across the UK. People who’ve shared their story often find it a really positive experience and an opportunity to make a real difference for people living with Neuroendocrine Cancer, and their families.

Whether you are living with Neuroendocrine Cancer, or supporting a loved one who has been diagnosed, we’d love to hear from you.

How can you get involved?

All you need to do at this stage is click on the ‘Share your story’ button below and answer some questions, giving us as much information as you can and feel comfortable with. If we need more details, a member of the Stories team will get in touch to have a chat.

Thank you.