[dlaxague]

This evidence (follow the link to the Cochrane report in the first post in this thread, and/or read Susan Love's comments) rehashes a big story. There has not been a research study that has validated the benefit of BSE (or for that matter, CBE). There have been several good studies that show no benefit to life (no improvement in survival) for teaching women to do BSE. This information is not an opinion, but the conclusion of the well-respected Cochrane experts.

Of course we all (bc survivors, researchers, and Cochrane too, I'm sure) wish that it were different - that we had a wonderfully reliable method of finding breast cancer and that this prevented many deaths. But alas, we do not (yet) have that. At least mammography has some evidence of small benefit to support its use. BSE has been well-studied and found not to provide benefit. CBE has not been studied - that answer is truly up in the air. But the results of the BSE studies remind us that just because something seems intuitively true does not mean that it will be so.

FINDING a lump does not (alas) equate with saving a life. In addition, looking for lumps in this particular way leads to invasive and potentially harmful interventions for benign findings. It's just not as simple as the intuitive thinking that says to us that size-of-lump equates with threat-to-life. As we gain understanding of breast cancer's behavior, we realize that it's so much more complex than that.

One way to illustrate that complexity would be to make a list - two columns of women's names. One of those who are alive after primary diagnosis, one of those who have died after same. Next to each name, the method by which her primary was detected. I would wager that those ways-of-detection would be the same for each group. Yes, lives are saved by detection and especially by treatment improvements. But the ritual of formally-taught BSE, with its rigid schedules and techniques (and attendant guilt when not done properly) provides no additional benefit over what currently exists for screening and detection (report changes, get mammograms as recommended). NO benefit. NONE. So why are we wasting so much time and money promoting BSE? I can think of SO many ways that the money and effort could be better spent.

In my opinion, the most important thing that we can do as survivors is not to advocate for women to do more BSE/CBE/mammography (current standards for "early" detection), but rather to advocate for more research. We need to use our leverage to remind people that we do not yet have the answer to breast cancer. The standards of early detection - BSE, CBE, mammography - are poor tools at best.

Yes, we must use mammography because it's what we have, but at the same time, and more importantly - we need to advocate for better methods. We need more research into such things as Jean's link talks of (dilon). I don't know if that's the answer, and neither does anyone else at this point. But we need to KEEP LOOKING for better methods, because we don't have good ones right now.

It's fine to encourage women to participate in available screening and certainly we should encourage them to pursue further investigations of unusual findings (found by any means). But I think that we need to be careful to also let people know that we use these methods because they are all that we have, but that they are crude and unreliable methods. Of course we wish that it were different. But it's not going be different (we are not going to significantly decrease death from breast cancer) until more is known about breast cancer prevention, detection, and treatment - and that is what we should be telling people.

To further complicate the issue regards the "early detection" is the fact that should we find those better methods of early detection, we do not (yet) know what we should do if these methods find cancer earlier. We don't want to start lopping off breasts or tissue of women whose cancer or pre-cancer would never threaten their life - but we do not yet know how to tell who is at significant risk and in need of intervention (although here, too - great progress is being made).

Don't get me wrong - I am grateful for, and in awe of, how much has been learned about breast cancer. But we have a long way to go. To imply that we have it under control, by making trite statements like "early detection is the best prevention (or protection)" is so simplistic as to be untrue. The truth is that we are far from being able to prevent death from breast cancer. As survivors, our words and opinion hold weight. Use your leverage - advocate for research!

Respectfully,
Debbie Laxague

PS: Just my opinion - I think that this forum would garner more respect, both from within and from without, if more of us were willing to put our name behind our comments. At least a real first name?