Martha Carlson, in this piece in CURE, outlines problems with the SEER database, especially for Metastatic patients.

The current data say that 89.9% of people diagnosed with breast cancer are alive at five years, but because recurrence data are not collected we don’t know how many of that 89.9% are living with stage 4 breast cancer. Though factually correct, the data misleads us. Since SEER doesn’t track cancer recurrences, including metastatic spread, a person who was stage 2 is always stage 2, even if she is alive at five years with metastatic progression that will eventually cause death.

We at METUP echo Martha’s frustration. The National Cancer Institute must find the resources to fix these glaring omissions in the SEER database. Only with accurate data can we start to find a cure.

Read the entire article here.

“How can you know us if you don’t count us.” Metastatic Patient Wants Changes to SEER

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