Neuroendocrine cancer - does anyone else have this?

Has anyone here been diagnosed with Neuroendocrine cancer?

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  • 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. 

    Good luck with your journey xx

  • Offline in reply to Pnet

    Just wondering how your scan went.  Diagnosed with NETs across both lungs, inoperable and currently on surveillance- diagnosed in July last year 2025.  

  • Offline in reply to Noo1967

    Thank you for remembering! I've had the scan & in that limbo-land we all know so well, waiting for results. My appointment with to Consultant is late March, just got to keep hoping for 'no evidence of progression'.

    How're you doing? Xx

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