
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don’t always mean a misunderstanding by patients. If I am to believe doctors uttered some […]

UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs) Phase III NETTER-2 trial met primary endpoint of improvement in progression-free survival (PFS) and key secondary endpoint of objective response rate (ORR) in patients with Grade 2 and 3 […]

Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To the patient, the injection delivery is almost as important as the drug”. I also add that my opinion is based on thousands of comments about the patient experience in my […]

Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays were put on the back burner, there were too many problems and too many risks – not least of which was the lack of overseas insurance cover for my condition. […]

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. […]
I am in total agreement. Terminology must change so patients with NETs understand this disease is not rare. NETs is not as common as some other cancers and can be tricky to diagnose. Of course, there is a process of elimination through various tests and procedures. But thinking in terminology taught in medical schools must change.
My husband, a practicing radiologist until his death last month, lived by the zebra code. OLD SCHOOL! We must use proper language to describe common, not so common and uncommon medical conditions. Patients need to educated, not insulted.
thanks, I often feel alone in this thinking. I know I’m not but more people within the community need to speak up and not be frightened to challenge.