Breast density inform inconsistency delivers confusion
July 17, 2014
By JoAnn Pushkin
We have reached the tipping point. We have reached the tipping point. By population, over fifty percent of American women now live in states that require breast density information be provided to them in the letter they receive after their mammogram. Nineteen states have now enacted some variation of mandatory inform. But the notification women receive varies state to state, with the level of detail differing and not necessarily consistent with the information to be discussed with their physicians.
Individual state reporting standards have resulted in inconsistent notification. The specificity and depth of density information a woman receives will depend on what is required in her home state. For instance, in some states women receive only general information about breast density, while in other states, women receive clear and unambiguous notification that they have dense breasts.
As an example, consider the difference in the official wording between neighboring New York and New Jersey notification:
New York
Who receives: Patients with heterogeneously or extremely dense breasts.
Notification required: Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks for breast cancer. At that time, ask your doctor if more screening tests might be useful, based on your risk. A report of your results was sent to your physician.
New Jersey
Who receives: All patients.
Notification required: Your mammogram may show that you have dense breast tissue as determined by the Breast Imaging Reporting and Data System established by the American College of Radiology. Dense breast tissue is very common and is not abnormal. However, in some cases, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with a risk factor for breast cancer. Discuss this and other risks for breast cancer that pertain to your personal medical history with your health care provider. A report of your results was sent to your health care provider. You may also find more information about breast density at the website of the American College of Radiology, www.acr.org. In 2012, New York became the first state to enact a law providing for personal density notification.
Since New York’s enactment, most states drafting legislation have followed suit either using the same/similar language or by going one-step further and reporting a woman’s specific breast tissue category (one of four categories: fatty, scattered, heterogeneously dense, or extremely dense).
The opportunity for informed patient discussion about density, personal risk and supplemental screening may depend on where the patient lives and what she has or hasn’t been told. Taking a look again at New Jersey’s notification law, which became effective on May 1, 2014, it’s easy to see that it is neither specific to the patient nor specific to only those with dense tissue. The law requires all women be notified that they “may” have dense breasts (including women who do not). Though members of both the New Jersey advocacy and radiological communities have voiced their concerns to state legislators that this one-size-fits-all language provides no direct notification to women who actually have dense breasts, as yet, no amendment has been introduced.
Right now, just over half (58 percent) of American women live in states with varying degrees of breast density notification- and the rest live in states with no such requirement. All U.S. women deserve the same opportunity for an informed conversation about breast density. In 2010, efforts on the federal level for an amendment to the reporting requirement of the FDA’s Mammography Quality Standards Act were initiated. Though there has been some progress on federal regulatory and legislative fronts, four years and 19 states later, there is still no national standard.
While each state law furthers breast density awareness, a single national reporting standard is needed to address the growing inequity created by the patchwork of state initiatives.
Author info: JoAnn Pushkin is a two-time breast cancer survivor and breast density inform advocate, author and speaker. She is co-founder of D.E.N.S.E. (Density Education National Survivors’ Effort) and of D.E.N.S.E. NY.
We have reached the tipping point. We have reached the tipping point. By population, over fifty percent of American women now live in states that require breast density information be provided to them in the letter they receive after their mammogram. Nineteen states have now enacted some variation of mandatory inform. But the notification women receive varies state to state, with the level of detail differing and not necessarily consistent with the information to be discussed with their physicians.
Individual state reporting standards have resulted in inconsistent notification. The specificity and depth of density information a woman receives will depend on what is required in her home state. For instance, in some states women receive only general information about breast density, while in other states, women receive clear and unambiguous notification that they have dense breasts.
As an example, consider the difference in the official wording between neighboring New York and New Jersey notification:
New York
Who receives: Patients with heterogeneously or extremely dense breasts.
Notification required: Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks for breast cancer. At that time, ask your doctor if more screening tests might be useful, based on your risk. A report of your results was sent to your physician.
New Jersey
Who receives: All patients.
Notification required: Your mammogram may show that you have dense breast tissue as determined by the Breast Imaging Reporting and Data System established by the American College of Radiology. Dense breast tissue is very common and is not abnormal. However, in some cases, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with a risk factor for breast cancer. Discuss this and other risks for breast cancer that pertain to your personal medical history with your health care provider. A report of your results was sent to your health care provider. You may also find more information about breast density at the website of the American College of Radiology, www.acr.org. In 2012, New York became the first state to enact a law providing for personal density notification.
Since New York’s enactment, most states drafting legislation have followed suit either using the same/similar language or by going one-step further and reporting a woman’s specific breast tissue category (one of four categories: fatty, scattered, heterogeneously dense, or extremely dense).
The opportunity for informed patient discussion about density, personal risk and supplemental screening may depend on where the patient lives and what she has or hasn’t been told. Taking a look again at New Jersey’s notification law, which became effective on May 1, 2014, it’s easy to see that it is neither specific to the patient nor specific to only those with dense tissue. The law requires all women be notified that they “may” have dense breasts (including women who do not). Though members of both the New Jersey advocacy and radiological communities have voiced their concerns to state legislators that this one-size-fits-all language provides no direct notification to women who actually have dense breasts, as yet, no amendment has been introduced.
Right now, just over half (58 percent) of American women live in states with varying degrees of breast density notification- and the rest live in states with no such requirement. All U.S. women deserve the same opportunity for an informed conversation about breast density. In 2010, efforts on the federal level for an amendment to the reporting requirement of the FDA’s Mammography Quality Standards Act were initiated. Though there has been some progress on federal regulatory and legislative fronts, four years and 19 states later, there is still no national standard.
While each state law furthers breast density awareness, a single national reporting standard is needed to address the growing inequity created by the patchwork of state initiatives.
Author info: JoAnn Pushkin is a two-time breast cancer survivor and breast density inform advocate, author and speaker. She is co-founder of D.E.N.S.E. (Density Education National Survivors’ Effort) and of D.E.N.S.E. NY.