[Lani]

Unregistered? You must have spent a lot of time gathering that information and I would be interested for you to tabulate it and post it. I used to be able to easily find how many participants there were on this site, but no longer find it with ease. I also have trouble finding the personal histories portion of those who have registered ie, what stage they were, how treated etc I would to find in the past with more ease. However...

There are more than 2 million breast cancer survivors in the US alone out of a US population of 307 million, approximately half of them women (of course many of those are not in the years one normally gets bc ie, 0-20 year olds or commonly gets bc 20-40 year olds--and BRCA triple negative bc tends to be more common in the younger age groups than the ooder.

Since 20-25% of breast cancer is her2+, one could roughly estimate that 400,000 to 500,000 of those 2 million bc survivors are her2+ and a small minority of those are Stage IV. Even then, the number of registered members who post on this website probably make up 1-2 per cent of that ie, only one or two out of every one hundred her2+ breast cancer patients or their friends/families/caregivers posts here and many just lurk. And that is not the half or one-hundredth of it even.

There are 6.8 billion people worldwide--not all are female, nor all in the age groups that get bc, but let's suppose 2.7 billion are. Since the site is international, that would mean that only one or two out of every thousand or so bc patients posts on this site. How does one know when someone stops posting if they just got on with their life/ had other family members whose troubles took over much of their time vs. died of breast cancer vs died of other causes? or many other reasons

A much less time-consuming and more accurate/representative way to have a feel for what the statistics are for her2+ breast cancer, whether Stage I-III or Stage IV, is to look to the scientific literature. California itself has a fully funded agency to gather cancer statistics and it is far from being alone.

I had to Google to get the figures for the US population and World population. There are wonderful resources on the web and on this site for more accurate statistics. Her2 testing is not being performed worldwide, so we may never know how many her2+ breast cancer survivors there really are worldwide, but it can be inferred.

In the best of all possible worlds, all would be tested (and treated) and all have internet access, literacy, the ability to type in foreign languages and a feeling of responsibility to share their experiences with others to be added into the statistics (which would also enable them to be helped by the comradery, information and hope this site provides)