There is harm in giving false numbers
This week, Ann did the footwork (thank you) and posted about a false statistics that has been made very popular within the breast cancer blogosphere. I must confess, that I am guilty of using this false statistic. But worse, this false statistic has caused me great amount of unnecessary stress and emotional harm.
What is this statistics? It is the “30% of early stage breast cancers go on to metastasize at some point”. I’ve seen many different articles that talk about how “early detection” doesn’t necessarily save lives, because we do not know what is causing metastasis, and some people who do everything right still get metastatic disease. However, saying that this will be true for 30% of us is just plane scary. It adds to the fear mongering that is all too present in our culture today.
One of the biggest challenges of being a part of the blogging community is that of critically assessing anything that is posted on blogs. It is something that I often do, but for this one statistic, I did not. I found it ever pervasive, and thought that someone must have come up with that number some how. It is also too easy of a statistic to use. It is useful when trying to make a point. But, it also does a lot of harm – and that harm is mostly to those of us who have undergone treatment for early stage disease and are trying to get on with our lives. We don’t need that extra fear of 30%, especially when the number might actually be much lower for a given person.
If there is no national register for metastatic disease, and no data on how many people progress to metastatic breast cancer, then how the heck could one even come to that number in the first place? There would be no way to know that information.
So, now I need to reprogram my brain. I need to remind myself that the number is a false one. My chances of survival are much greater than 70% (or truly, since I had three primary tumors – .7*.7*.7 = 34% – yikes). The reality is that I did catch it early, and I did treat it aggressively. I have no idea what my prognosis is, but my care team are certainly not treating it like 34% …
This got me looking. According to the Komen website, someone in my age rage with ER+ breast cancer has a 94% survival rate. Since I had three cancers, one might wish to multiply this so (.94*.94*.94 = 86%) – which is a far cry from the false statistic above.
The other challenge with the current statistics is that there have been significant advances in the treatment of HER2+ breast cancer (not the kind I have). So, women with HER2+ cancers who would have had a significantly poorer prognosis 10 years ago are expected to live cancer free for a lot longer. In this case not enough time has passed – not enough people who had HER2+ cancer, and received the targeted therapies, have died of natural causes yet – they are still alive. So the whole statistic in this area is hugely unknown.
As a survivor, the only statistic that really matters is 1 – that is, it really doesn’t matter what the numbers fall out to be because you already drew the unlucky straw, and as my oncologist is want to say “it is what it is”. However, propagating a false statistic in order to try to encourage people to donate more money to research (or funnel more money into metastatic research), does not serve our community well. It only causes to feed the flames of fear of recurrence and progress – flames that most of us do not need fed. We’ve been fighting the fire long enough, we need to put it out and move on with our lives.