Breast Density Notification Laws Unclear On Delivery and Goal

December 27, 2013

Breast density notification mandates exist in 18 states but there are still questions about their utility and implementation. Mary Lou Smith, JD, MBA, discusses the controversial topic.

The issue of breast density and breast cancer screening is controversial. It is known that dense breasts can hide tumors so women who have dense breasts have a higher risk of developing undetected breast cancer tumors. Women with dense breasts are generally younger, although as breasts lose density with age, older women become higher risk because of their age.

There has been a lot of debate regarding the importance of informing women if they have dense breasts and if this notification is important, when and how to tell women. Eighteen states have enacted breast density notification legislation - 13 in 2013 alone - mandating that physicians inform their patients if they do have mammographically dense breasts. Connecticut was the first state to do so in 2009.

However, these mandates do not do much about addressing patient individuality and other risks that should be considered when reviewing breast cancer risk. Diagnostic Imaging spoke with Mary Lou Smith, JD, MBA, who published an article in the Journal of the American College of Radiology, addressing concerns regarding such mandated patient information. 

 

Why did you to write this article?

I wrote the article to provide another viewpoint for women and their physicians to consider. I was looking for a balance to the passion of those who believe that their density caused them to be diagnosed with a higher stage disease and impacted their prognosis and quality of life. Their stories are powerful and get attention but may not provide the fuller picture of where the science and the technology is and may be in the near future.

I’ve been an advocate in cancer research for a number of years and quite a while ago, I was having dinner with a very prominent breast cancer advocate. She found it very exciting about the whole idea of mammographic density. I asked her why this was important and she said had mammographically dense breasts and her cancer was caught late. She went through a lot of treatments and is now alive and well.

Some women with mammographically dense breasts who develop cancer say after the fact that they wish they had known about breast density and the increased risks. They feel that they would have done things differently had they known. But I don’t know if that is true or not. When we look at the research, it is not very clear that mammographically dense breasts really make a difference in survival certainty.

Breast density isn’t a blanket thing; everyone is different in too many different ways. We need more research because there are so many unknowns.

There seems to be concern about who will relay this type of information and how it is done. What are the issues?

I’m very fond of most doctors, but is every internist and GP ready to have that type of a conversation about breast density and what it means for that woman? The physicians don’t always have the full history either. The ones who do know the most about density are the radiologists, but are they ready to take this on? The physicians need good communication skills to balance the women’s anxiety and how to help them understand their risk. People don’t always understand risk.

Are we going to talk to the women in person, on the phone? Get a feel as to their risk aversion? How are they internalizing this? It’s almost like there would need to be a two-step process here. You’re going to have to have a beginning conversation, which would be best face-to-face but I doubt that is going to happen - but at least follow up with a phone call. This all needs to be considered.

And, just because a woman has dense breasts doesn’t mean she wants to learn everything there is to know about mammography density. But we have to make sure she absorbs all the information before she can be asked how she wants to proceed. And does she have more questions? Who can answer them?

So what do you think about the mandate then?

First of all, it is somewhat of an unfunded mandate. It calls for more testing, but it doesn’t pay for the testing. I see that as an issue from the patients’ perspective as well as the providers’ perspective. You may have a provider who doesn’t believe in the mandate providing the information and now they also have to tell the women that they should have more tests, but they’d have to pay out of pocket.

Their insurance may pay for the tests, but there could be a fight for that. It’s an uncomfortable position for someone who doesn’t believe in the mandate, I would think. However, it is the law, so they have dealt with it before. They’ve likely come to grips with it and figured out how to work the system to the best of their ability for their patients. But there is also the issue of false positives - this leads to even more testing and anxiety for the women.

This is an area that where I think it would be very helpful if some professional organizations got behind what to tell a woman in this situation.

So what would you like to say to those who aren’t yet sure about this type of mandate and how it may affect patients?

We need clear communication and a balanced approach for the patients: “here’s what we know; here’s what we don’t know.” Again, this is where I think the professional organizations could be so helpful.

We need more research. Let’s give some money to figure out what this all means to the woman. How did knowing this change her life, her thought process? What did she do with that information? Was it good information?

I honestly don’t believe that legislation is always the answer by itself.