Our purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.

After having Neuroendocrine Cancer for 7 years & now that it is stage 4 inoperable & incurable (1 believe in miracles & alternative therapies) | want to raise awareness & am arranging charity night for 6th September for Neuroendocrine Cancer Uk

In 2017 after having polyps (benign) cut out of my large bowel over 3 years on the last one the Dr (Collins) noticed something in the small

After having being diagnosed with IBS for many years it was not.

My 60th Birthday present was the diagnosis of Neuroendocrine cancer in my small bowel, stomach lining & Pancreas. IT IS NOW THE 10TH MOST PREVALENT CANCER.

I had 5 hours surgery in the October which left it in the Pancreas.

I was then classed as watch & wait. Hopefully in the future I could have a whipple op on my Pancreas. No treatment.

Fast forward to 2021 after going to UCHL London for a galium scan Professor Pritchard rang me to give me the news that the N E T was now in my right breast (did not know what type of B C it was so had to go to Linda Mc Cartney) 3 lymph nodes in the stomach, pancreas & it had metastasised to the skull, left collar bone & spine.

To say I was shocked was an understatement.

It then meant I had to go on treatment which was a 4 weekly hormone injection (which costs the NHS £1k) thank god we do not have to pay for it.

Now that the tumour in the skull has grown slightly I am going through 1 round = 4 cycles of PRRT (intravenous radiotherapy) Apparently It costs the NHS £40/50000 They will only allow one round at the moment. I have just had my last PRRT Presently I am isolating for 11 days as I cannot go near people with being radioactive.

l am now under Clatterbridge in addition to the Royal, Liverpool I think because I do not look like your typical Cancer patient people are unaware, which is fine but not when I am experiencing symptoms/side

effects of the medication. They do not know what has caused it same as Gary's Parkinson's. I reckon it is external factors.

My Nan died at 54 with bowel cancer when I was

7. I have always been wary of this & mentioned it numerous times to the G P. who said it was IBS for years & it was not. It is rare, sneaky & mimics other conditions so is hard for medical profession to diagnose.

Please let me know if you can come to the charity night & or donate any raffle prizes or auction prizes. Friday 6th September. Wood Lane Social Club. Liverpool 27 Same duo I had for my Dads 90th & surprise musician coming from London. Who I can now announce is the fabulous RUMER. There are a few tickets left