When I was waiting for my first round of results, Mel Brooks would pop into my head from time to time with High Anxiety. Songs often come into my mind when I'm having a crisis. Fortunately this one would make me laugh, which was a welcome reprieve during a fear-ridden time. As I mull over different aspects of DCIS, I'm trying to figure out how to talk about that engulfing feeling of anxiety - because when people have DCIS, they often feel so much fear (as I did), despite being told that it may never turn into invasive cancer. Martina Navratilova described her DCIS diagnosis as her "personal 9/11", which shows how evocative that fear can be.
The difficulty is exactly this: it may never turn into invasive cancer. But it might. People are enduring mastectomies, lumpectomies and radiation, hormone therapy - just in case. Articles about over-treatment abound, and yet few are discussing the ramifications of under-treating DCIS. We still don't know which cases of DCIS are going to turn into invasive cancer, or when. Surely a proactive approach is better than waiting until even more aggressive therapies like chemo are needed or, heaven forbid, when it is potentially too late? The act of waiting takes its toll. Not knowing what you are dealing with is a mind-fuck. Sorry, but I can't think of a better word to describe the turmoil. All very well for researchers to say don't treat the disease unnecessarily because the statistics are on our side, but what of the anxiety?