I didn’t understand when I was diagnosed how people are counted in the US or elsewhere, for that matter. As I learned more about the databases kept by the federal and state governments, I was really astonished to learn how these large and complicated databases are falling short. Not to say that their efforts don’t help at all, just that the job isn’t complete.
Over the last few years, there have been some pilot programs to figure out how to count those who are diagnosed with early stage disease (Stages I-III) and then later progress to Stage IV. Estimates are between 20-30% of those diagnosed with early stage disease will become metastatic.
That’s quite a few people to count.
Metavivor has been instrumental in meeting with and advocating for SEER to be updated so that the databases can more properly reflect what is really going on. Other countries have done this already and there are technology options that can be extremely useful as we seek to understand the extent of the number of people affected by breast cancer.
Want to know more? Get involved with advocacy through Metavivor! Check out Metavivor.org for more information.