Hi Susie and welcome to the Cancer Chat community.
I'm very sorry to hear you've been diagnosed with a carcinoid tumour. This must be very difficult but hopefully some of our members who are also contending with this will be along soon to share their experiences and advice.
You can find out more about carcinoid tumours, and how to cope on our website, but if you have any other questions or concerns you would like to discuss with one of our cancer nurses, you can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very insightful and will do all they can to give you any further information and advice
Keep posting if you find it helps Susie, and remember that you are not alone.
With due respect to the wonderful Cancer Research, you won't find too many on here. But I have a private group of almost 10,000 people talking about this very subject. I'll only link it in with permission from a moderator.
Hi Steph. Yes I do. I started off with a small bowel cancer tumour thatbi knew nothing about and was then diagnosed with Neuroendocrine tumours which cover 97% of my liver so unable to operate, and I also have carcinoid syndrome which I believe come hand in hand. I have just finished 4 rounds of nuclear treatment PRRT whichni have to say feels like it nearly killed me, this was last Thursday and started in March 24. What's your story and hopefully we can help each other as this sh!! Is rare x
