Despite the additional explanations added and attempts at clarification of the new USPSTF guidelines, the women I meet with breast cancer and those who haven't had it are still angry. They are indignant when they ask, "Who are these people?" "Did the government really support this?" "Is this some form of female population control?"
There are those who argue that insurers haven't changed a thing yet. And they're right. There are those who say that the researchers did not exactly claim BSE is worthless or that women shouldn't touch their breasts until they're fifty. They're also right. But those who argue such research will not change what insurers cover and the way many doctors respond are not right.
In fact, the USPSTF is, according to its website, the "gold standard" for clinical and preventive services."
The resulting evidence of such research reports (those supported by EPCs) "are used by Federal and State agencies, private sector professional societies, health delivery systems, providers, payers, and others committed to evidence-based health care."
So, if someone tells you that the "new guidelines" aren't going to affect your choices, they're misinformed.
Unless the researchers step back to reconsider their recommendations based on understated study limitations, recognize that they went too far too quickly, that they conveyed their conclusions too callously -- even if unintentionally, anger and resentment will linger.
Change of this nature should be approached with an abundance of caution. And it was not.
The reasons for such recommended changes should be conveyed to the public with extraordinary attention to clear and accurate communication as well as sensitivity. They were not.
And ironically, for all the talk about protecting women from anxiety by starting routine screening mammography later and doing away with training in BSE, the recommendations derived from the USPSTF report created a maelstrom of fear and concern.
With regard to breast self-examination, the guidelines do far more harm than good. A nurse practitioner, breast cancer survivor told me, "If a woman cannot tell me that something suspicious in her breast is familiar to her, then I'm sending her for tests." What that means is that women who don't have at least what Dr. Otis Brawley, chief medical officer of The American Cancer Society, calls "breast awareness," if they don't pay attention to breast health until age fifty, they not only might miss and ultimately die of breast cancer, in the interim they will undergo the tests and experience the anxiety that the USPSTF guidelines are supposed to avoid. So where is the win there?
Besides, I've yet to meet one woman who has said, "Spare me the anxiety. I love these guidelines. I can go about my life now free of worry about cancer until age fifty and then only every other year?" Women aren't that stupid.
We should be concerned that public outcry will lessen and this research actually will be used to alter the current guidelines. If so, insurers will wait until things have gotten quieter and they will remove coverage for routine screening mammography for women below the age of fifty and perhaps other relevant testing as well.
Many doctors will take the recommendations too much to heart and do less listening than they should to women who find suspicious lumps in their breasts. And many women will die.
Let's back up, shall we? And get it right - both what we know and what we don't. Let's remember that research is a process and it takes a considerable amount of it to draw conclusions with confidence.
- Recommendations should stick to what is learned from a study. If, for example, researchers don't know if women over 74 should have routine screening mammography, then they shouldn't mention them in public guidelines or at least indicate that, until future research indicates otherwise, they should be treated the same as women age 74.
- If BSE is too expensive for the benefits derived, instead of recommending that it be dropped, recommend that women of all ages know how to recognize changes in their breasts - to be breast self aware. And those who wish to continue BSE should do so. Provide doctors with information to give their patients on both.
- At the very least clarify why women in general aged 40 to 49 should not have routine screening mammograms and which group within this one should. Do the same for biennial screening for women 50 and over. Clarify, too, why the resulting loss of life is okay - even if it's because costs need to be cut somewhere. Honesty here is critical. If this can't be done, then retract the new age-based guidelines.
- And rather than support conclusions with concerns about how much women might worry when informed of potential danger or presented with false positive results, concern yourself more with the anxiety created by giving them too little information conveyed in a manner that raises more questions than it answers.
This report should stand as a lesson in health communication and in the caution required of responsible health professionals when what's at stake is life -- not just a number on a page -- but rather a mother, sister, aunt, daughter, cousin, colleague or friend. Surely we can do better for them.
P.S. It's interesting that the pap test guidelines changed today -- at least from the American College of Obstetricians and Gynecologists. We're hearing that this is different than the breast cancer guideline changes because cervical cancer develops slowly, but, we're also told, women should still go to their doctors once a year to get "other tests". Who is going to do that? And for which tests? Again, how about some specificity.
Dr. Reardon also blogs at bardscove.