[dlaxague]

Hi Joanne and all,

I'm going to start right in with replies to your words:

OK I revised my title:
BSE can help in BC detection!

Okay, I'll go along with that. But detecting is not the same as life-saving. Again, studies that had a group of women who were carefully taught correct BSE did not show that the women who found their bc this way (as opposed to some other way, any other way) lived any longer. IOW, there was no benefit to finding a lump by doing BSE. It boggles my mind that so much effort has been spent promoting something that cannot be shown to be of any benefit. It's not as if they haven't looked at it (which is pretty much the case with CBE - only one study that compared CBE/mammogram with mammogram alone, and found no benefit for CBE). There have been BSE studies and none has been able to show a benefit.

Perhaps someone will volunteer to set-up a poll on our HER2 member site:
(1) BC/lump found by mammogram
or
(2) BC/lump found by BSE (or by signifant other)
or
(3) BC/lump found by CBE (doctor)
or
(4) BC/ lump detected by another method


But wait. What would be the POINT of this? I would almost guarantee you that if you subdivided these questions into another three categories - 1. those with so far a primary diagnosis only; 2. those who have had a recurrence since primary diagnosis; and 3. those who have passed away from their disease
- you'd have a similar distribution of ways of finding the initial cancer. Except of course those who presented at stage IV.

I've had this discussion before, about BSE, CBE, and even mammography, whose benefit is surprisingly small. I'd like to see an ad in the NYT in October. Two main columns. Random names of women living after bc diagnosis, and women who have died of their disease. After each name, method by which their bc was detected. Again, the distribution of ways of detection would be the same.

My point is not so much that BSE and CBE are of no benefit, although it does seem that is the truth. My point, and my reason for opening the discussion, is that to me it is, at best, misleading (at worst, lying) to promote a health care intervention with such fervent hoopla when we cannot prove that it does anyone any good. At LEAST provide that information to women, in the hoopla. TELL them that studies have not shown benefit but that it may be useful to know their breasts and watch for changes. Do not say that "BSE is the best protection". Good GRIEF! We do not have any very good methods to detect breast cancer and we need to say that. Otherwise the message is that breast cancer is all under control and interest in funding research and assistance will dwindle.

And it IS a valid argument that this intervention (BSE) can cause harm. It increases fear (must check every month, constant vigilance). It causes guilt (your fault, you weren't vigilant enough). It causes unnecessary and anxiety-provoking interventions (extensive imaging, biopsies) that carry their own risks. And all this, for no benefit.

[COLOR="Blue"]Although your lump was not found during a BSE, it was found by physical manipulation of some sort. (SOE=Significant Other Exam). And as a result of it being found, you had treatment. Do you truly believe this has not increased your survival?/COLOR]

Yes, since I'm still here, it seems that for me, treatment definitely increased my survival. But the method of detection of my breast cancer had nothing to do with whether I survived or not. If my husband hadn't found it that day, and I had found it the next week, it would have made no difference. At 6 cm, someone would have found it soon, somehow. There is a difference between formal BSE (monthly, formula movements, etc) and incidental detection (random noticing). Noticing, by whatever means, is the beginning of treatment and that's good. But again (broken record), BSE as a formal prescription for noticing does not improve outcome. So why are we wasting all this time, money, and effort on promoting BSE. Wouldn't those resources be better spent on research of better ways of detection, or assisting those already diagnosed?

(I am sorry for what happened to your mother, Joanne - that sounds so hard, but people who note a lump by whatever means and do nothing about it are irrelevant to this discussion - that's a whole 'nother issue. Although I can't let it pass without giving appreciative credit to those brave advocates and reach to recovery volunteers who brought breast cancer out of the closet so long ago.)

Okay, this is getting way too long. As for my providing links to NBCC and the gov't website that noted insufficient evidence - I would agree with you that there's no point to doing that just out of the blue. But I posted that in response to a promotion of an action, and a promotion of a product (that is making money for someone). Showing that something that's recommended has no proof of benefit is a valid (and imho, important) piece of information.

I, too, examine my chest. I examined my breasts when I had them. But these are crude (and it appears, ineffective) ways of stopping death from breast cancer. We need better ways. And we need to be saying so, loudly.

Phew. Thanks again for the discussion. We can agree to disagree, without getting too heated. I admit that I do get heated, when I think that misinformation is being disseminated. I've gone back and re-written some of the above, in an attempt to sound more calm.


So, if you've followed this discussion this far, you must be interested in the science of cancer. Would you be interested in learning more? NBCC had a wonderful program for advocates, called Project LEAD. Check it out at their website: www.stopbreastcancer.org , and apply if you're interested. It's a rich time - you'll learn so much and meet new friends. The program is free, and there is scholarship funding available for those who can't afford the transportation and lodging.

Debbie Laxague