March 21, 2013

Are Right-to-Know Breast Density Laws Good for Women’s Health?

There’s been much discussion lately about routine mammogram screening for breast cancer, including, according a new study, the very real psychological harm connected to false positive readings.

Complicating this information further is the issue of breast density. Dense breasts have less fat and more glandular and connective tissue. While some women’s breasts become less dense and more fatty as they age, other women’s breasts remain relatively dense.

Why does this matter? Having dense breast tissue makes it harder to obtain an accurate reading of mammograms. It also increases a woman’s risk of developing breast cancer.

However, questions remain about what women should do with that information. In fact, recent research suggests that actual risk of death from breast cancer is not increased for women with denser breast tissue.

Despite a lack of certainty about how dense breast tissue affects health outcomes, a handful of states have mandated that providers discuss breast density with women. On April 1, California will become the fifth state with a breast density notification law in place. Similar bills have been introduced in other states.

At the federal level, the Breast Density and Mammography Reporting Act was introduced in Congress in 2011, but never made it out of committee. It, too, would require that women be told about breast density, the correlation with cancer, and that they might benefit from supplemental screening tests.

It’s not clear, however, if additional tests would even help.

The authors of a recent commentary in the medical journal Radiology note that while explaining the increased risk of cancer to women with dense breasts “seems ethical, reasonable, and appropriate,” there is little known about what additional follow-up might help those women.

They conclude that “the advocacy push to legislate mandatory reporting of breast density and possible adjunct screening for all women with heterogeneously or extremely dense breasts is far outpacing the reporting of evidence that supplemental screening may provide better outcomes for these patients.”

They also raise concerns about invasive procedures: “Because some cancers detected at screening may not go on to cause symptoms or death, additional interventions performed on these excess cancers would only increase morbidity for these patients.”

These concerns are similar to those raised about routine mammography in younger women — that more testing may increase harm to women from extra procedures, while not actually increasing survival rates.

Breast Cancer Action addressed mandatory notification laws in late 2012, coming down against such legislation:

Unfortunately, the importance of breast density is still not well understood and as a result there is no clear action for women who receive this information. Breast Cancer Action believes that medical practitioners should discuss all aspects of a woman’s health with her and we do not believe legislation is the appropriate way to address the issue of breast density. We believe resources and energy are better spent on working for better medical care and understanding the ways to prevent breast cancer in the first place.

Laura Newman, a medical journalist, has also looked at this issue. Her Patient POV blog has a couple of clear, useful posts, including “Are Dense-Breast, Right-to-Know Laws Helpful?” and “Is the Bar High Enough for Screening Breast Ultrasounds for Dense Breasts?

Where does this leave women, especially those who may be told they have dense breast tissue as a result of one of these new laws? Unfortunately, there is no clear answer right now.


7 Responses to “Are Right-to-Know Breast Density Laws Good for Women’s Health?”

  1. Peggy Polaneczky, MD Says:

    Rachel –

    Thanks for adding your voice to this issue. These breast density laws are really misplaced advocacy, and causing so much fear on the part of women. Here is a blog post I did on the issue –

    http://www.tbtam.com/2012/08/yorks-breast-density-law-tmi-for-too-many-women.html

    All the best,

    Peggy

  2. Elizabeth Says:

    Thanks you so much for this article! The breast density laws are such an important, complicated issue. I am glad your shedding so light on it.

  3. Mary Anne Says:

    I’m not sure what a new law could do. A false positive, or even a “maybe” after a mammogram can be upsetting. I once had to undergo an MRI after a breast screening. It was quite stressful and fortunately, was negative. Those with dense breasts have to undergo many of these types of incidents. It would be nice to find a way to avoid them.

  4. Heather Says:

    Like Mary Anne, I’ve had additional tests (sonogram) because I have dense breasts. Last year, my gynecologist found lumps on physical exam. I was sent immediately for a mammogram and sonogram. Fortunately everything was fine but I’m really glad these options were available.

    Also, since patient advocates are a significant part of this effort, I’m confused as to why OBOS is objecting to this. Is there something I’m missing? Peggy talks about free speech issues for physicians –but what about patients’ rights to be fully informed?

  5. Heather Says:

    P.S. Here’s a report from the Institute for Health Quality and Ethics http://instituteforhealthqualityandethics.com/uploads/120214_IHQE_Response_to_ACR_Statement__2011_FDA_Advisory_Board_Meeting.pdf

  6. Rachel Says:

    Thanks for your comments, everyone, and for the added links. Heather, speaking only for myself as an individual – absolutely patient engagement and advocacy is a good thing, but in this case it’s not clear that these laws actually do anything to save women’s lives, and may really just subject them to more and costly tests and interventions. There’s nothing really evidence-based we can tell women to actually do in response to the information. So unless the laws require telling women in the form, “Hey, you have dense breasts, but we don’t really know how to follow up on that, and it probably doesn’t make a difference in terms of your survival,” they’re probably not that helpful. Peggy’s post has a nice exploration of those concerns, by the way. Thanks for commenting.

  7. Heather Says:

    Thanks for the follow-up Rachel. I’ve written a longer comment on this on my blog if anyone is interested:

    http://hmprescott.wordpress.com/2013/03/26/whats-wrong-with-right-to-know-breast-density-laws/

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