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Topic: Breast Density: The Secret That Is Killing Women (re mammograms)

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Jun 1, 2012 12:30PM

NKCell wrote:

If you get a mammogram and you are one of the 60% of women WITHOUT dense breasts, your mammogram will be 98% accurate. If are one of the 40% of women WITH dense breasts, your mammogram will only be 60% accurate (digital mammogram) or as little as 27% accurate (film mammogram).

That means a digital mammo will miss 40% of cancers if you have dense breasts, and up to 73% of cancers if it's a film mammogram. If you have dense breasts, your referring gynecologist will likely receive information in a report that your breast density significantly lowers the sensitivity of mammography, but few doctors share this with patients. The letter you receive will not tell you about your breast density. It will say your mammogram is normal. This violates the Federal Mammogram Quality Standards Act that requires that patients receive a summary of their mammogram report in clear language. Normal is not a synonym for unreadable.

Sign the petition to congress here to demand the FDA enforce the Mammogram Quality Standards Act. The American Cancer Society estimates that 40,000 to 45,000 of women receive false negatives every year on mammograms. The Institute for Health Quality and Ethics estimates that 10,000 annual deaths from breast cancer could be prevented if women were to receive follow-up screening when necessary.

In Connecticut a law was passed requiring women be notified that breast density may obscure cancer and requiring insurance to cover follow-up ultrasounds to women with dense breasts. Two studies have shown that the detection rate for women who receive these ultrasounds has doubled. Nonetheless, the American College of Radiology and other organizations have opposed similar legislation in other states.

 I have started a blog about efforts to enact the legislation in NY: Other sites to check out: Are You Dense? and Are You Dense? Advocacy (legislative arm--twitter handle: AreYouDenseAdvo. Find them on Facebook as well).

The Institute for Health Quality and Ethics has done a lot of research and analysis on this issue. The Institute's twitter handle is INHQE and you can also connect to them on Facebook. If you received a false negative or suspect you receive a false negative because of breast density (you'll need to look at your old mammogram reports)--please contact me or the women at Are You Dense so we can tell your story.

On the other side of the issue, the American College of Radiology warns that informing women about their breast density could do them harm because it could discourage them from getting their annual mammogram. We counter that it is not acceptable for individual women to be considered collateral damage in a mammogram messaging war. We're not anti-mammogram. But if you get a mammogram, you have the right to know if your breast tissue obscures cancer so you can discuss follow-up screening options. Women have the right to be informed. I invite you to join our grass-roots movement.

Hallie Leighton

I was diagnosed with stage IV cancer at 39 after a false negative mammogram at age 38 (and a strong family history). 

Read my story on CNN:

See me tell my story on PBS: (fast forward to 16:34)

Dx 4/10/2010, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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