Hey NCI, You Can’t Manage What You Don’t Measure

You cannot manage what you do not measure.

When people ask me “How many people in the U.S. have metastatic breast cancer,” I have to say  “I don’t know exactly, but if they’re all coming over, I’d better stock up on frozen pizzas.”

Because we can only guesstimate how many people in the U.S. are living with metastatic breast cancer. Very few people present with MBC as I did (6% or less). Unfortunately, this isn’t the  first breast cancer rodeo for most people with a Stage IV diagnosis.

But NCI and SEER database record only incidence, initial treatment and mortality data. What happens in between? I don’t care myself–it’s a moot point for me–but how about the millions of women who have been treated for early stage breast cancer. Do you think they might be a tiny bit interested in tracking recurrence data?

Some observers estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

National Cancer Institute – Office of Media Relations recently touted its  Cancer Statistics Review, a report published by NCI’s Surveillance, Epidemiology and End Results (SEER) program. I asked NCI via its Office of Media Relations Facebook page why we don’t have more definitive data on people with MBC.

I’ve enhanced NCI’s observations with some understated illustrations. Coming next: Some helpful suggestions for NCI. Stay tuned!

–Katherine

NCI’s Office of Media Relations Facebook response:

Thank you for your interest in NCI and the SEER Program. The SEER Program recognizes the importance of understanding and capturing disease progression and recurrence. You are correct in saying that SEER records information, including stage, at the time of diagnosis and follows men and women who have been diagnosed with cancer to estimate survival.

Patients are not followed for subsequent medical outcomes and information on disease recurrences are not collected by the SEER cancer registries (nor by any other population-based cancer registry system). There has been interest in tracking recurrence but given the degree of cost, time and effort to collect accurate incidence information, the capability to track recurrence for breast cancer and over 100 other types of cancer would require a considerable additional commitment of time and resources.

Harry S. Truman popularized the phrase "The buck stops here."

Due to the current fiscal climate, expansion of our registry systems is unlikely. Should our fiscal situation change both nationally and at the state level — since states have the legislative authority for cancer being a reportable disease — tracking recurrence is certainly an item that could be considered.

Thank you, Strunk & White!

Therefore the number of women living today with metastatic breast cancer cannot be directly observed from population-based cancer registry systems such as SEER. Other methods of estimating disease recurrence, such as mathematical modeling or analysis of medical claims data, are being investigated to address this important question. However, these types of alternative approaches are in development and results from these approaches are not yet available.

Perhaps I should appeal to a higher authority.

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8 thoughts on “Hey NCI, You Can’t Manage What You Don’t Measure

  1. nancyspoint says:

    As someone who is brca2 positive I think about recurrence way more than I would like to. My doctor told me there are no reliable statistics available yet at all that predict recurrence statistics for brca people. Just another area in need of research it seems to me because as you said, how do you manage what you do not measure? So much more needs to get done here…

  2. […] previously noted, definitive  metastatic breast cancer numbers are elusive. How many people in the U.S. currently […]

  3. […] did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people…. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What […]

  4. […] did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people joi…. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What […]

  5. […] people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each […]

  6. […] people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each […]

  7. […] does not track when a patient’s disease progresses from early stage to metastatic. I found this interesting blog post with a response from NCI on why it is not tracked. The gist: lack of financial resources and complexity of […]

  8. […] remembered what Musa said about SEER and counting people with MBC. I did attend Project Lead.  I wrote about changing our population-based cancer registries to count people with metastatic recurrences on my personal blog. But it was a just a couple posts […]

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