Mammogram Guidelines: Science is Not the Enemy

By Alice Yaker

During the last month, since the new screening guidelines were announced, it seems everyone wants to talk about them. This happens at every gathering I go to -- from dinner parties to staff meetings, from water cooler meetings to family get-togethers. And everyone has strong opinions. Some of my friends and colleagues and family members start off by saying "My opinion is…" and state that opinion with great certainty whether or not it's supported by anything more than personal experience or a feeling they have.

Now as the head of an organization that's all about and based on our personal experiences, I know the value those experiences have in helping others get through a diagnosis. But I also know that personal experience is only one part of what we need to know to help others and ourselves make the best decisions for our health. At SHARE, we encourage our volunteers and advocates also to understand the science of breast and ovarian cancer so they can better use their personal experiences to help individuals as well as have a broader impact on policy and practice.

In impassioned comments to my blog and in all comments I've heard in the last several weeks, I've encountered lots of compelling personal stories arguing for early screening: "I was diagnosed through a screening mammogram and I know others under 50 who were as well"; "If I had waited, I wouldn't be alive today." Some feel so strongly that these guidelines are foolhardy they recommend we "ignore this theory completely," or they indignantly ask,"Who do they [the panel] think they are telling me what to do?" I've also heard opinions questioning whether screening has any value: "Thirty years of radiation to my breast…for what?" or "many biopsies that found no cancer."

These personal experiences and opinions are all valid, and valuable. But the problem is we don't seem to be able to get beyond them. Rather than engaging the challenges raised by these new guidelines, the breast cancer community is getting caught up in an incredible polarization of beliefs and attitudes. We're pitting the personal against the science as if they were in competition and as if one were more credible than the other. The best example of this that I've heard is the statement, "I'm a person, not a statistic." The truth is, we're actually both.

We need to diffuse this polarization of the personal and the science. They are not at opposite poles. Each impacts and intersects with the other. Scientific studies and results affect and should affect health policy and clinical practice, which affects each of us personally. And it is our personal experiences with illness and disease, in this case breast cancer, that helps drive the scientific research that needs to be done. And right now, what we personally need is for scientists to find better tools to understand whether what is detected will be lethal, whenever it is found.

I'm thinking that maybe a positive result of this outcry is that we women will become more involved in decision-making in this as well as in other health-related matters. With greater access to health care, more of us will take the opportunity to engage our health providers in a conversation about when and how often screening is best for each of us, personally. Maybe this will encourage our health providers to be more respectful of our individual concerns.

See Advocacy Manager Gail Garfield Schwartz's piece on what medical organizations have to say about screening mammography since the new guidelines were announced. Click here.

Posted December 21, 2009.

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There are plenty of women under the age of 40 who have been diagnosed with breast cancer. Having done 2 no-cost screenings for 54 women, there were several women who had breast cancer and did not know it until screened. Additionally, not all of them were over 50. I went to a fundraiser for women 40 and under for breast cancer awareness. There were 10 "young" ladies present well under the age of 40! To delay the screenings will mean even more late state diagnosing for too many and more deaths instead of the increasing decline we have achieved. Do they feel the same about delaying prostrate cancer screening??

— Rosalie Harris

Alice, your point here is well taken. There is great energy out there which can have positive results. One of these results should be the acknowledgement that screening decisions are complex and that a sound decision rests on being educated on the benefits and risks of screening as they apply to the individual. We have oversimplified the matter for too long. Over the years, the advocacy experience has shown us that women can understand the complexities of these decisions and make the best possible decision in collaboration with their doctors, and in the face of incomplete information.
Barbara Krauser

— Barbara Krauser, SHARE Hotline Director

I think it is important to mention that since there was so much uproar about the recent mammography guidelines, the task force has backed off from its recommendations, and the old guidelines will prevail. The insurance companies will contine to cover mammograms annually from age 40 as in the past.
My own feeling is that pragmatism was conquered by humanitarianism.
Certainly, better methods need to be explored, but until then do not remove what already exists which has saved some lives, especially since no oncologist was present on the task force making this recommendation.
A human life is not a statistic.
The UFT Newsletter had printed this latest information.
I do agree with Alice that this recent issuse has mobilized many women to take action and to carefully examine the complexity of these issues.

— Lee Miller

Alice Yaker

Alice Yaker, a two-time survivor of breast cancer, is SHARE's Executive Director.