BCAM: October 25th

I’ve mentioned the SEER program a few times this month and promised to share more. Well, here it is! SEER stands for “Surveillance, Epidemiology and End Results Program.” and can be accessed here. The bill that created it was signed by President Nixon, so it’s been around for a long time. Any database that has been around for that long and contains that much information is bound to have some issues and updating it can be complicated.

So, what’s the big deal for those of us with Metastatic Breast Cancer (MBC)?

Here’s how Adiba puts it …

Fighting in the shadows is a good way of putting the fact that there is no reliable data to count those of us living with Metastatic Breast Cancer (MBC), especially those who have progressed from an early stage diagnosis to Stage IV. Additionally, our deaths are not always counted because there are a variety of things that doctors can enter on a death certificate.

Updating the SEER database has been part of the Metavivor Stampede for several years and the amazing thing is that there has been some progress in researching how the database could be updated. At least one pilot program has been conducted.

For anyone who is interested in learning more about SEER, how it works, and how to interpret the data, follow T. Allen Parnell on Twitter! Not only is he a gifted statistician (he actually makes statistics understandable, which is HARD!), he is also a widower and his wife was murdered by MBC. He has a vested interest in helping us get counted. He’s also a professor and a really generous man.

Why is being counted so important? Knowing how many of us need new medication, need support, need research is vital to convincing Pharma companies, insurance companies, medical professionals, legislators, $$ people, etc., support us and provide us the help we need. Without knowing how many people the medication would affect or help, all we have are extrapolations and generalities. Not as convincing.

And now you know more about SEER and counting!

8 thoughts on “BCAM: October 25th

  1. Very interesting information.What can we do as patient advocates to be counted? I’m interested to know if hereditary cancers are counted or just counted as cancer type (ie breast, ovarian). I followed your link but could not find references. Thank you!

    Liked by 1 person

    1. It is my understanding that only cancer types are counted at this point in the SEER database but that hereditary cancers are counted separately by the genetic testing companies. As to addressing being counted, Metavivor has championed a push to get the database updated and was the impetus behind the year long trial. I’m hopeful that new information will be forthcoming soon!


    1. The way I understand it is that the database registers the initial staging only. If that staging changes as a person lives with an early stage diagnosis to progress to stage iv, the database does not capture this change. The only way cancer is tracked is initial diagnosis and death.

      Liked by 1 person

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