Welcome to Cancer Chat Caroleann1 although I'm sorry you've been diagnosed with neuroendocrine cancer.
I've had a quick look through the forum and in the last month two members - Mariee1 and lizscenic27 - have made posts about wanting to connect with others with this type of cancer, so you are not alone Caroleann1 and hopefully it won't be long until they stop by to tell you more about themselves and what they have been through so far.
We have a section about neuroendocrine cancer on our website as well, but if you have any further questions about your diagnosis or what lies ahead, you can give our team of cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very knowledgeable and will do all they can to help.
We know how scary this time can be so we're sending you all our support Caroleann1, and wishing you all the best on this journey.
Yes, I was diagnosed in 2018 with pancreatic neuroendocrine cancer, spread to liver, lymph nodes and now also strangely behind one eye!
I have quite a lot of different treatment and a couple of surgeries, and I know it's hard to find people to chat with about it, as it seems still quite a rare one to have.
Hope you're doing OK. Any help I can give, please ask
Hi Caroleann1, I have pancreatic neuroendocrine cancer, grade 1, stage 4, recently diagnosed, found incidentally during asthma checks, still symptom free, although very widespread throughout my body. I have started Lanreotide injections & have my first check up scan in January '26.
It's a rollercoaster. I went from being told I had 3-6 months life expectancy to being told I had an estimate of 5-10 years in the space of less than 3 months.
Hi I've just joined this forum and I have neuroendocrine cancer, pnet, diagnosed 5years ago. I've had surgery, whipples, then had a recurrence with liver mets 2 and a half years ago. I've had captem chemotherapy which shrunk the mets a bit, and I am now on lanreotide injections. I am stable and being scanned every 3 months.
I find it's very up and down having neuroendocrine cancer with bowel and eating issues especially.
Sorry to hear you're having some issues. Are you having to use Creon or something similar with your food?
I was diagnosed 7 years ago and have a lot of ups and downs and now have diabetes as well, so it is certainly worth chatting to the dieticians as they are very good with what to eat and when, and the use of the enzyme replacements. Talking to the various teams available to you is definitely the way forward. I find they very helpful and very understanding.
