It’s well known that Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I’m one of the lucky ones, even though I still ended up with distant metastases and it feels odd to say that having distant metastasis is lucky!
I consider my diagnosis to have been incidental as they were not investigating cancer and I suspect that is the route for many cancer patients. I also think I was lucky because I had instant access to specialists and got quick treatment, and my follow up and support by a specialist centre is in place. I cope, but I wouldn’t say it’s easy living with and beyond cancer. As an advocate for a large online community, I do see many people struggle to get the same experience I had. I’m in no doubt that more must be done to help with earlier diagnosis, access to specialists and access to the right therapies at the right time. People must then be followed up with robust and expert led surveillance and support regimes, and for the long term. This must become the normal experience and this must become the minimum standard of care.
This cancer is unlike others where the primary tumours are only located in a single organ. With Neuroendocrine disease, the primary tumour(s) can be found in many different organs and many different parts of the body. The aggressiveness of these tumours can range from indolent right up to very aggressive types……read the remainder of Ronny’s article here.
Ronny Allan – Short Biography
Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer in 2010. He resides in Hampshire UK with his wife close to his own family and dotes on his four grandsons. He enjoys family life, travel, reading, walking cycling and watching football. Ronny blogs about cancer and his survivorship experience via his website RonnyAllan.NET . The blog has been featured by several international organisations including Cancer Knowledge Network (CKN), Cure Magazine, Macmillan Cancer Support, NET Research Foundation and Neuroendocrine Cancer UK. He is also a strong global advocate for Neuroendocrine Cancer awareness via his associated Facebook and Twitter sites.
He was the 2016 Winner in Best in Show Community and 2018 Winner Best in Show Blog in the WEGO Health Awards. In total he has had 14 nominations for these awards of which 6 resulted in places in the finals. He is currently a member of the Strategic Advisory Board at Multimed Inc, publishers of Cancer Knowledge Network and Current Oncology, the Ipsen Patient Advisory Board and in a 2019 tenure, the WEGO Health Patient Leader Advisory Board. In June 2019, his blog broke through the 1 million views mark.
Ronny is a regular speaker telling his patient story and other contributions to Neuroendocrine Cancer, including to audiences in Europe and North America. Ronny is passionate about modernising Neuroendocrine Cancer awareness and taking it to new audiences. He’s also a big believer in the patients included concept and his sites are accredited with Patient Included status.