Tag: Cancer registries

A cancer registry collects and combines detailed information about cancer patients and the initial treatments they receive to answer questions like—

Is there a certain area of a state where women are finding out they have breast cancer at a late stage, when it’s harder to treat?
Where will prevention efforts, like screening, have the biggest benefit?
What groups of people are most likely to get a certain type of cancer, like liver or skin cancer?

Cancer registries analyse the data collected and share the answers to these questions with other groups, like state comprehensive cancer control coalitions, which work to prevent cancer. These groups may find that some people aren’t getting cancer screening tests, or they’re making choices that raise their chance of getting cancer. The data may also show that certain groups of people are getting cancer more than others.

Cancer control groups and advocates work to address the problems identified. Then they look to cancer registries for new information to help them know if their solutions are working.

14Aug 2017 by Ronny Allan 18 Comments

The Invisible NET Patient Population

Awareness

OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine Neoplasms – not as rare as you think". However, most things I read indicate the figures were understated (words used by several NET specialists. Despite this date now being 8 years…

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 […]

Lanreotide: Ipsen injection devices vs generic injection devices

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 […]

Cancer doesn’t take holidays (but I do)

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 from Ronny Allan: No evidence of progressive disease at any site

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. […]

Exercise is Medicine

Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I’m coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors […]