What is SEER Data?
SEER is part of the National Cancer Institute and stands for Surveillance, Epidemiology and End Results (SEER) Program, a premier source for cancer statistics in the United States.
The SEER program collects information on incidence, prevalence and survival from specific geographic areas representing 28 percent of the US population and compiles reports on all of these plus cancer mortality for the entire country. For more information, click HERE.
If We’re NOT counted, do we still ‘count’?
As you will learn, however, many statistics for metastatic breast cancer are NOT collected. This is a major problem for the metastatic breast cancer community because if we are not counted, do we still matter? How can we expect to have adequate attention and funding directed to the needs of the metastatic patient for support, treatment and research, if we lack fundamental statistics like incidence and prevalence? We will try to put statistics in perspective for you on the following pages and explain what is known and what is estimated based on individual studies. Here’s another ‘curve ball’ of which you may not be aware:
What is the real number of people diagnosed each year with metastatic breast cancer and how many people are living with MBC in the US?
These are good questions, but first let’s look at how we should define the entire metastatic breast cancer community.
Cases of metastatic breast cancer consist of two groups:
- those where the initial diagnosis was Stage IV and
- those where there was a metastatic recurrence after an early stage breast cancer
Statistics do not capture those with metastatic recurrence!
- The NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. Therefore the SEER databases collect only those with an initial Stage IV diagnosis, which represents only a small portion of metastatic breast cancer. Under the current system if everyone was reclassified as stage IV when their cancer metastasized, there would be no meaningful survival statistics because early stage cancers (I-III) would all have 100% survival and stage IV would have 0% survival.)
- If you were first diagnosed with an earlier stage cancer, you are not excluded from breast cancer statistics, but you are not counted as being metastatic
Working for Change. . .
This excerpt from the MBC Alliance 2016 Change.org petition further articulates the issue and explains what we, working with the Alliance members, hope to accomplish.
I was Stage IV from the start—but most people aren’t. According to SEER incidence figures, 6% of all invasive breast cancers are Stage IV at initial diagnosis. People like me are counted as Stage IV—because initial diagnosis is tracked. But most of my MBC friends had metastatic recurrences and will be counted ONLY after they have died.
Most people do NOT present with a metastatic diagnosis – they develop metastatic disease a few months or even many years after their diagnosis and treatment for early-stage breast cancer. We need SEER and the CDC to track breast cancer recurrence—which is how the majority of people join the metastatic breast cancer ranks.
My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.
My friend Sarita was diagnosed with breast cancer in 2006. In 2013, Sarita learned her breast cancer had metastasized. Like Shirley, Sarita was NOT counted. In June 2016, Sarita died—and was, at last, counted.
Since 1973 and 1992 respectively, the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) the CDC’s National Program of Cancer Registries, have been collecting population-based information on cancer cases and the initial course of treatment. SEER and CDC data plays a critical role in helping researchers and policy makers monitor cancer trends and determine what research is funded.
According to the Metastatic Breast Cancer Alliance’s Landscape Analysis, which analyzed research grants from the major cancer research-funding agencies around the world, research funding for metastatic breast cancer accounts for only 7% of the total breast cancer research investment. Without an ACCURATE count of the number people currently living with Stage IV breast cancer, that number is unlikely to change.
The Metastatic Breast Cancer Alliance wants Congress to give SEER and CDC the funds and authority they need to work with state and local population-based cancer registries to collect accurate statistics for those with metastatic breast cancer. Specifically, we want answers to the following questions:
1. How many people are alive today living with MBC?
2. How many early-stage breast cancer patients experience a recurrence? How many of these recurrences represent metastatic disease?
3. How have outcomes changed over time?
As of 2016, people living with metastatic breast cancer have remained in the shadows, so discounted as essentially not to be counted at all—until they died. This has GOT to change.
We want SEER, CDC and all cancer registries to stop ignoring metastatic recurrences and start counting ALL people living with metastatic breast cancer. We can’t remain uncounted and invisible.