This is a response, mostly crafted on Facebook, to some of the panic over the recently released breast cancer screening guidelines. I’m surprised this is coming to a head now, because I was reading about the shift in screening recommendations back in July. In October, the New York Times headline was Cancer Society, in Shift, Has Concerns on Screenings. (And of course, I feel I need to add a note on cervical cancer screenings. The Stranger Slog had a nice reaction piece to all the hubbub, too.)
First, some definitions from my Apple Dictionary.
sig･nif･i･cance |sigˈnifikəns|
noun
1 the quality of being worthy of attention; importance : adolescent education was felt to be a social issue of some significance.
2 the meaning to be found in words or events : the significance of what was happening was clearer to me than to her.
3 (also statistical significance) the extent to which a result deviates from that expected to arise simply from random variation or errors in sampling.an･ec･dote |ˈanikˌdōt|
noun
a short and amusing or interesting story about a real incident or person : told anecdotes about his job | he had a rich store of anecdotes.
• an account regarded as unreliable or hearsay : his wife’s death has long been the subject of rumor and anecdote.
• the depiction of a minor narrative incident in a painting.
The major issue is that people will cite anecdotes, and that anecdotes are a part of the statistics, but anecdotes are not necessarily statistically significant. This is an emotionally charged subject regarding life and death. We are so averse to death and dying that it is unlikely one of us would say “in the face of death, I would choose to do nothing if I had knowledge to do so.” The fact is that we will all die, and it’s just a matter of when and how. I posit that there is no “good time” to die or be dying. Cancer is a situation where we know of someone who has survived, and we know someone who has succumbed. We look at survival as the success, death as the failure. Maybe we didn’t do enough or have the right treatment? Or maybe that’s just the way it works. A person who survives cancer will still die another day, albeit later and possibly of something else.
Statistics can only tell you what is. When the efficacy of treatment is not “statistically significant” it doesn’t mean that 0 people get better and 0 people get worse/die. It means that the numbers of those treated that get better or die, and those that aren’t treated that get better or die are such a small percentage as to not make a real difference to the total number of people impacted.
The issue here is an emotional one, not one for the numbers. The issue is that the person who dies because of being treated too aggressively, too early for a cancer that wasn’t as serious may be some child’s mother. The person who dies because the cancer spread too fast and was detected too late, and could have been detected on a mammogram is another child’s mother. Two different people. Both anecdotal. One woman might have been saved by the new recommendations. One woman might have been saved by the old recommendations. When that “one woman” is your loved one, you don’t care about statistics. You just want to make it better, whatever it is. Statistically speaking, it’s a wash.
No person cares about the numbers when they’re the one it happens to. The March of Dimes states that 1 in 160 pregnant women experience stillbirth. I am the 1/160 of pregnant women. 0.625%. And this is just the statistic that stillbirth happens to, not the statistic for the type of/cause of stillbirth. When those factors are added in, my odds are not too dissimilar as the odds for being struck by lightning.
I can’t care about statistics in the face of grief. Statistics don’t make any sense to me, or to my heart, when I’m the one it happens to. I know that I, and those I love, would have done anything within our power to keep it from happening. The truth is, though, that even after dozens of tests and exams, there is absolutely no cause discerned and no definitive preventative measure that could have stopped it. Statistics offer no comfort when you’re the one impacted. It can, however, offer some perspective. Knowing where I am statistically helps me know that I’m not alone, even if I’m a statistic of an already smaller statistic of the population (woman, child-bearing age, history of pregnancy). It means I’m not the only one in my neighborhood. It means I’m not alone.
Anecdotes are important. They describe our human experience of the statistics, transcending the numbers, and helping us relate to each other on our squishiest, most vulnerable levels. They only tell part of the story, though. We love to share our stories of triumph, and there are others who love to relate the stories of those who have died, who might have lived “if only” something had been different. We can never know, though, if any of those “if only” situations would have made a difference. Earlier this year a friend of mine who is undergoing cancer treatment found out that his treatment triggered a rare and often fatal condition that ended up ravaging his kidneys and requiring him to have multiple blood transfusions and dialysis. Aggressive cancer treatment can be fatal. Cancer can be fatal. Cancer treatment is the choice to risk death by treatment or death from cancer, neither of which are certain. It’s important to weigh your odds and your options.
Finally, I’ll posit that maybe the real fear of these guidelines has less to do with the guidelines themselves, and more to do with our current health care system. I hear over and over again that people are afraid of their care being rationed. They’re afraid that their insurance, wherever it may come from, won’t cover the treatment that will save their life. People don’t want their options taken from them. They want to still be able to get their mammograms and PAP smears when they or their doctor think it’s appropriate. They don’t want their insurance provider telling them what’s covered and when they will have access to the tests. I can certainly understand that fear. To add to this part, though Consumer Reports cited Dartmouth research which found
…that patients with serious conditions who are treated in regions that provide the most aggressive medical care—more tests and procedures, more specialists, and more days in the hospital—don’t live longer or enjoy a better quality of life than those who receive more conservative treatment.
Patients treated most aggressively are at increased risk of infections and medical errors that come from uncoordinated care, such as doctors prescribing drugs that duplicate or interact with other drugs. They also tend to receive poorer care, spend a lot more money for co-payments, and are the least satisfied with their health care, the Dartmouth researchers found.
Statistics are a bitch sometimes, aren’t they?