Estimates Are Better Than Nothing

I need to talk about something that’s been really nagging at me. Please hear me out. Disclaimer: I’m a wee bit fired up, so don’t say you weren’t warned.

I’m not going to beat around the bush. The last week couple of weeks, and I’m still struggling to understand why, there were a pocket of individuals that seriously took exception to the use of certain Metastatic Breast Cancer numbers and statistics.

First and foremost, before ANYONE gets their fur raised: Yes, I know and agree that the SEER database is flawed. The database hasn’t and still is not correctly counting/tracking breast cancer patients that Metastasize. They are ONLY counting those patients diagnosed from day one (de Novo). Additionally, there’s the other question of how the MBC deaths are recorded. Is the death certificate correctly reflective of cause of death or a secondary complication? That could also have an impact on the true count and tracking of MBC patients.

Howthefuckever – bottom line, we can ALL agree, myself included, that we currently do not have a perfect study, calculations, formulary or recipe that will give us exactly perfect-on-the-nose-without-a-doubt figures for “the numbers.” We can agree on this, yes? Good.

Now that that’s out of the way….

Due to the above, (what we all just agreed upon), there are ESTIMATED numbers and statistics that are used among Oncologists, researchers, advocates and literally anyone in the medical field to demonstrate certain facts regarding BC/MBC. Let me say that again. There are ESTIMATED numbers and statistics that are used. Are these numbers perfect? Please refer above for that answer, we just covered that.

Estimated Number of Deaths

ACS does a through job of putting out estimates every year for estimated cancer statistics for all cancers. Including estimated number of people going to be diagnosed, estimated number of people that will die, incident rates and so on. It’s broken down per state and for the entire US.

Percent of Recurrence

While this issue with SEER exists, some study’s have been done to tackle this. However, this one is a huge trigger. Most curiously it’s with MBC Patients.

Beth Caldwell referenced one such study in her blog. In the 2013 study that focused on HER2 status on recurrence, it was concluded that it could be as much as 36% recurrence up to 12 years.  MBCAlliance, MBCN and METAvivor all align with an estimated 20-30% recur. Christina Curtis at SABCS presented a slide in front of hundreds that also referenced “20-30% of patients will recur with metastatic disease.” For those that weren’t in that conference Hall, not a single person stood up to correct her or question her on that statistic. I was there. It didn’t happen.

So, it’s 2019 and we have some new numbers, Here’s what we have according to The American Cancer Society.

  1. An estimated 42,260 people will die of MBC.
  2. An estimated 116 people will die every day from MBC
  3. An estimated 20-30% of those diagnosed with early stage disease will recur as metastatic – up to 20yrs after successfully completing treatment

Everyone wants to have correct data. No one wants to be caught talking out of their ass. More importantly, true and correct data is critical to researchers working to save lives. But, Like it or not, those are the estimates used and will continue to be used by the majority of people speaking for and about BC/MBC.

Now, just because these are estimates, that doesn’t mean organizations or individuals can just DECIDE to change or skew them to suit their agenda. It doesn’t mean it’s OK to dumb down the urgency that advocates have been pushing for. And it doesn’t make any sense whatsoever for other MBC patients to demand other patients/advocates to produce study’s or data to prove the numbers that we post about. THAT’S NOT THE POINT. At the end of the day, Advocates are working in the field, traveling, trying to move the needle for EVERYONE. Is nitpicking about how we don’t have accurate data, something we already are painfully aware of, something we want to waste energy on between each other?

After this week, I am officially done justifying my use of numbers/statistics that are widely used. We all have more important work to do. It’s January folks. We have a long year ahead and no one knows how much time any of us have.

Let;s make this year count.