So last week, when most of America was on vacation, a new study came out that showed that “Stage 0” breast cancer would eventually kill only 3% of those diagnosed with it.
For years, controversy has been simmering about this particular kind of breast cancer, “ductal carcinoma in situ,” cancer cells that grow in the breast milk ducts, but have not yet broken out into other breast tissue and become invasive.
Every year some 60,000 women receive this diagnosis, largely due to widespread mammography, and the idea that the key in cancer is “catching it early.” But here’s a twist: Despite an increase in DCIS diagnosis, usually followed by lumpectomy or mastectomy and radiation, the rates of invasive breast cancer haven’t dropped.
If “catching it early” was the sure way to beat breast cancer, you’d expect that all those DCIS diagnoses would lead to lower rates of invasive breast cancer. Remember, it’s not localized cancer that kills, it’s metastatic cancer that overwhelms our defenses.
As a result, many have questioned whether aggressively treating this kind of cancer is what’s really appropriate.
This most recent study seems to support the side that advocates for watchful waiting: Out of 108,000 cases of DCIS tracked between 1988 and 2011, only 956 patients eventually died of breast cancer. Of those, 517 never had invasive cancer in the breast after treatment seemed to cure their DCIS.
Think about that: That means that only 439 out of 108,000 went on to have invasive breast cancer. If “catching it early” is the first line of defense, how can this be?
Part of the problem is that, as patients and not oncologists, we’re sort of fighting the last war. A few decades ago, everyone thought that “catching it early” was key. Big, popular organizations like Komen for the Cure pounded home the “get a mammogram, catch it early” message and enlisted an army of women in pink t-shirts and tutus to make the message part of popular culture.
Just as Komen was transforming breast cancer from a shameful secret into a popular movement, scientists started to understand that cancer is a lot more complicated than any of us had imagined, a LOT more complicated.
With understanding of breast cancer’s complexity always developing and changing, we patients need to think about a different marching slogan: “Catch cancer early” isn’t quite enough. What we need to do is “catch the right cancer early.” We need to catch the killers, and keep an eye on the lazy ones.
For a patient, this is not a satisfying message. “Catch it early” is easy to understand, like stamping out a campfire before it becomes a forest fire.
Compare this with, “Do a bunch of genetic analysis, then probably just be super careful.” That doesn’t feel nearly as good. It doesn’t address our fear. It doesn’t make us feel like we’re doing something. It doesn’t calm the feelings that led a college friend to tell me after I was diagnosed, “If it was me, I’d just want to go into the kitchen and cut it out with a chef’s knife.”
Every patient has to do what they think best, what makes sense to them. But remember: Doctors used to do “radical mastectomies,” disfiguring surgeries that not only removed the breast, but also chest muscle, sometimes even a few ribs. Then studies showed that cutting away half a woman’s chest didn’t actually lead to better results. So medical practice changed, less drastic mastectomies became the norm.
This is probably what’s going on here: We’re beginning to understand that DCIS is not usually an emergency. And we’re working toward a day when we will be able to tell which cases of DCIS are emergencies. We’ve been treating DCIS with a sledgehammer; what we need is laser-like precision.
While this isn’t a simple and satisfying message, I think it’s extremely hopeful. What we’re all after is not just treatments that make us feel empowered, but treatments that actually work.
