I was first diagnosed in August 2019 and after seeing multiple consultants in a short period of time I was referred to Sheffield under the care of Dr Munir, luckily for me Sheffield is a NET centre of excellence and from day 1 I have been reassured that I am in the best possible hands.
Being diagnosed came as a shock as I was only 28 at the time, what came as more of a shock was discovering that I had probably been living with this for a number of years. My first consultation with Dr Munir connected a lot of dots and had I known that all of the individual symptoms I had been experiencing over the years were all part of a bigger picture I would have spoken to my GP sooner.
I was soon put onto Octreotide daily injections whilst I awaited my PET scan and although Dr Munir assured me that the octreotide would ease some of my symptoms the first week of injections knock me off my feet and left me unable to leave the house. Once my body got used to the octreotide I was able to return to work and I felt a sense of normality again.
Alongside scans Dr Munir requested genetic testing to see if I carried the MEN 1 gene due to me being so young, my genetic test came back as showing no signs of the gene which was a big relief to myself and my wife as by this time we had discovered we were expecting our first child!
After my PET scan it was confirmed that my primary tumour was located in the small bowel with metastasis to a lymph node in my neck, lesions to my lower spine and a lesion in my lung. Luckily (if anyone with NEC can say they are lucky) for my my cancer is well differentiated and slow growing. After multiple MDT meetings it was agreed that I would begin monthly Lanreotide injections and would be scheduled for a right hemicolectomy alongside being referred to west on park hospital for 3monthly Denusomab injections.
My surgery was scheduled for late February in 2020 and despite being young and relatively fit I was again knocked off my feet post op, again I think this was partly due to the octreotide infusions I was given before, during and after my surgery to prevent me going into carcinoid crisis. I was soon back on my feet again and within a month I was back at work in my manual wharehouse job, and I was back to normal in time for the birth of our little boy in April.
My scans currently show stability and no further growth so for now I remain on the Lanreotide injections every 3 weeks with octreotide rescue injections when needed alongside my 3 monthly denusomab injections. I have been told that I could be offered PRRT should my cancer being to grow but for now I am continuing to work full time and run around after my now 18month old little boy! I hope that reading my story helps to raise awareness and makes people aware that you can still lead a full life even if we do turn into a human pin cushion!

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