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.
10 thoughts on “ATLAS, shrug”
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Blonde, I’m with you on this one. It is important to note that, on average, according to research about research, nearly every research study published will be contradicted within 12-18 months by a study that demonstrates the opposite findings. I will refrain from my usual hard-won-knowledge-by-personal-experience rant about anti-hormone drugs and their cost in side effects & reduced quality of life. I like the idea of SERMs, the class of drugs to which tamoxifen belongs, but when they invent one that is smarter, that targets only the estrogen in breast tissue and leaves our skin, brains, joints, vascular and uterine tissue alone, then I’ll get excited.
I don’t want to rain on anyone’s parade, but I just think the headline blaring 25% is a disservice and I wish tthe researchers and media had created balance with the absolute numbers. 2-3% might not mean a lot to some, but mean the world to others — I get that. But I know it took me some time to get used to all of these headlines after I was diagnosed and I (slowly) learned not to take them at face value. After being diagnosed, I remember fielding a slew of calls and emails touting the latest study — only to read it and see that it referred to post-menopausal women or BC that had a different tumor biology than mine. That’s all I was trying to say … I think the medical community will be doing a lot of thinking about this. Just look at the constant flip-flops on soy and whether or not it’s okay for ER+ patients. That recommendation has changed at least 3 times since 2009 — I’m still not sold and it’s easy enough to avoid. ; )
Blonde & AA, I totally agree with you both – hope I didn’t seem like I was siding with the media in my earlier reply — was trying to say that I “get” where you are coming from, absolutely. It is a huge frustration to me that the misleading headlines sell stories while confusing and often distressing people really affected. Agree, too, in hoping we can find better ways to deal with the side effects and improve QOL for all. Thanks to both of you for stopping by and your thoughtful comments. B
You’ve hit the nail on the head on many levels, but what bothered me most, was the headline itself. Hyping a “25% increase in benefit” when the absolute numbers are only dropping from 15% to 12% is hardly something to get excited over. Maybe I’m jaded (or just trying to rationalize my own situation) but I was unable to tolerate Tx — depression, horrific nose bleeds and it aggravated an already bad fibroid issue. I was borderline to begin with, but my doctor decided we’d see how it went. It didn’t. Two months later, he called it all off. While I was terrified of “not doing anything” (especially since I had already avoided chemo and radiation) my oncologist explained that the benefit would only be lowering my risk by 2% to 3% at most — and that he was comfortable with that risk profile in my situation.
I’m not a statistics major, but hearing that the absolute benefit of a 10 year regimen of Tx only lowers risk by 2% to 3% feels like ATLAS is misrepresenting the results. I’m dumbfounded that every headline is heralding the “25%” (even from many journalists I greatly respect) and the absolute numbers are a footnote in fine print.
Or maybe I’m just over justifying the fact that I wasn’t able to stay on it … for those that a 2-3% offers some hope, I don’t mean to take that away …
I get it….the media never considers the delicate balance and the trade offs…thanks, and be well! Beth
Beth…. Are you in San Antonio? The buzz around the room wasn’t as palpable as my iPad and phone… email notifications, tweets, links to all the stories hitting the news feeds…
I am Cinderella, watching the tweets and returning patient phone calls in chilly Baltimore! Though it was kind of exciting to follow from here. Raise a margarita glass to “ambivalence” for me! Beth
Yes, this new recommendation will undoubtedly raise lots of new questions. And it makes me wonder if those on AIs will be next. As is always the case, each woman’s case must be analyzed and decisions must be made with full knowledge of risks/side effects vs. benefits. One thing I believe we need to push for with recommendations such as this one, is requiring doctors to do a better job of helping women (and men) deal with the side effects. These things must be addressed as well. I strongly believe there should be better survivor ship follow-up and not just regarding this issue, but across the board. Thanks for writing about this.
Hear, hear. Couldn’t agree more! B