It’s only a couple of weeks since I celebrated my 15th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2. Thinking back to that period of my life, I’m happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it’s a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn’t take this diagnosis lying down, I stood up and marched forward, diverting around obstacles on the way. I must also add my wife Chris, who inspires and motivates me to keep going. I class her as a ‘virtual member’ of my MDT!
The NET expertise available to me meant that I was provided with early and well considered treatment options, including 3 surgeries by experts in the field of neuroendocrine and endocrine diseases, a liver emobolisation and the use of somatostatin analogues since shortly after diagnosis to tackle the clear evidence of carcinoid syndrome. That was finally suppressed 6 months after diagnosis. Thinking back, it did explain the odd symptoms I was experiencing prior to diagnosis. As stability improved, so my surveillance periods were lengthened, first to six months at year 5, then to 12 months at year 10. There was a blip at year 8 where it increased but that just shows the versality and reaction of a professional MDT.
2025 Plan. Lanreotide will continue at 90mg as it has been since the first injection in Dec 2010. My Oncologist said it is reasonable to assume my low volume metastatic disease is being suppressed by Lanreotide. My blood tests are generally OK, everything is within tolerable limits. I’m definitely healthier today than I was at diagnosis, despite the 15 years of advancing age. I’m also much fitter than I have been for a good while and I remain motivated to maintain a normal life. I go back for another round of surveillance in 12 months. Further lengthening of my surveillance period beyond a year remains a possibility. We shall see next year!
Thank you for reading and joining me for this 15 year journey or at least since you’ve been following my blog or social media pages!
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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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