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.
- An estimated 42,260 people will die of MBC.
- An estimated 116 people will die every day from MBC
- 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.
Hi Susan, I guess I missed that discussion/debate about the numbers. Maybe for the best. I know it’s been discussed on and off for years now. As far as I’m concerned, the number that matters most is your #1 up there. Why is that number going up when we’re “catching” more breast cancers early, and that’s still usually touted as the holy grail, so to speak. The public really needs to better understand the reality of breast cancer including the still staggering number of deaths each year from mbc. Thank you for your important piece. May 2019 be kind to you. May it be kind to us all.
Thank you Nancy. I know you understand. I appreciate and respect your advocacy. My greatest fear is that the public will focus on the word “decline” and not understand that people are still dying at an alarming rate from Breast Cancer and Metastatic disease in general. That’s where we need to keep the focus and I know you always do.
Well said, Susan!
Seriously. We do the best we can with what we got. Maybe some day the seer database will be fixed and we’ll count everyone. But does it matter? The fuck not……what matters is that we figure out how to treat this shit and stop the death and destruction. Figure out why Mets happen, and who’s most likely to get them and how to stop them. Eventually we’ll figure out how many.
I’m a statistician. I’d love accurate data. But there are far more important things to contend with right now.
Absolutely. Thank you.
I saw some of that. Early after my diagnosis I tried to track down the origin of that, and whether it was legitimate. Obviously I couldn’t, but it has always seemed to be an accurate estimate. Not sure why it matters whether it’s 25% or 35%, though. 1% is too many, and none of those numbers matter when you’re one of them, as you well know.
It does bewilder me the things people like to fight about, when they could be putting their energy toward something productive.