I could feel the collective dread starting even before the data were released yesterday at the San Antonio Breast Cancer Symposium. The breaking news involved tamoxifen, both savior and nemesis for many women whose breast cancer is—or was—sensitive to estrogen.
It has long been known that, taken for five years, tamoxifen does a great job of reducing the risk of recurrence in women (and men) with hormone-positive breast cancer. Results of the large and randomized ATLAS study, reported yesterday, suggested that this job might be even better accomplished if tamoxifen was taken for ten years.
While the public everywhere is reading headlines which oversimplify and overgeneralize these findings, survivors everywhere are, medically speaking, freaking out. I know this because survivors see developments differently: the stakes are high. We do not ever ignore a breast cancer research headline; our heads whirl around at the mention of a “finding”, and we quickly discern its real importance. We scan our brains for relevance to our situation, and how it compares to the care we received, or are receiving now. We remind ourselves that we made the best decisions we could at the time, that advances are always good for the women who come after us, and also to exhale. We leave voicemails for our doctors, trying hard to sound much more calm than we really are, asking, casually, if there is anything we should know about the new findings. Nothing urgent, Dr. Superbusy, just call me back at your convenience, no big deal.
I would not presume to say what changes the ATLAS data will make in clinical care going forward. This data is brand-new, getting its first bath, haven’t even gotten to know each other yet data. It is yet to be examined and to be analyzed and poured over in the way oncologists love to do and which makes me feel like I need to put my head between my legs. The standard of care may change. Or it may not. But I will let the braintrust figure that out.
What I do know is that tamoxifen has been a great advance in the treatment of breast cancer, and these data are both exciting and confounding, perhaps, to all players. Hormonal therapy is easy for some, and when oncologists tell you that it is well-tolerated by most, they are telling the truth.
But just because women on tamoxifen are compliant, and “tolerate it well from a medical perspective” does not mean they are doing so without cost and without effort. They do so because, like Amazon warriors, they recognize a good trade when they see one. In the face of added protection from a breast cancer recurrence, they bravely and, often silently, “deal” with the menopausal-like symptoms and sexual side effects, reminding themselves of the benefit. They know what is at stake.
Which is why, for survivors most immediately impacted by this news, it is not, perhaps, as simply terrific as it sounds. Women (and men) who dutifully completed their five years of tamoxifen wonder now if it was “enough”. Some wonder if they should restart to grasp that added benefit. Women who are nearing the end of their treatment sigh as they realize that someone may have just moved the carrot. Young patients who have dutifully, if ruefully, delayed pregnancy until the completion of hormonal therapy, are bereft. Their voicemails will not sound calm at all.
What will it mean? Shrug. We don’t know yet. I’m not sure anyone does. We need to wait and see. Until then, we will be there for each other. To remind each other—and ourselves—to exhale.