Breast cancer screening guidelines were once again in the news recently, and the current focus is on how much the recommendations vary, from the United States Preventive Services Task Force (USPSTF) to American College of Obstetrics and Gynecology (ACOG) and American Society of Breast Surgeons (ASBS), even to your individual doctor (and what your insurance will cover…) This is yet another aspect of healthcare that is confusing, and it’s easy to have the reaction “what do the doctors/scientists/health insurers/cancer organizations know anyway? Everybody keeps saying something different.” We want to unpack this conversation a little bit, and hopefully provide some clarity in what YOU should do with this information.
Why do we have different guidelines?
The different screening guidelines occur because different groups of different kinds of experts are reviewing scientific literature, cancer registries, mortality rates, and using other sources of data to make recommendations. These are not made up out of thin air, but based on research. The USPSTF, for example, looked at breast cancer incidence and mortality rates and determined that the “net benefit” of regular breast cancer screenings at the ages of 40 to 49 is “small”. Now, we can almost hear those of you who were diagnosed or had a loved one diagnosed at their first mammogram at 40 say “it wasn’t a small benefit to ME!”; however, the USPSTF was supposed to examine things mathematically, so their recommendations are sound based on that analysis and focus on age as the only risk factor. These recommendations are not intended to apply to those at higher risk due to ethnic background, family or personal health history, and they do not take into account that breast cancer, though uncommon in younger women, is often more aggressive.
ACOG and ASBS are physician groups, so their members deal with breast cancer every day and see patients and families struggling through diagnosis and treatment. They have lost patients to breast cancer, so this is personal for them. This undoubtedly has an effect on their recommendations, but not in a negative way. Younger breast cancer patients can often have more severe disease, and having some “baseline” mammograms can help providers down the road to know what is normal for each patient. Therefore, it makes sense that these providers would want to see patients start screening for breast cancer younger and more often.
Insurance companies make coverage decisions based on the USPSTF guidelines (they are required to use that as a baseline), federal and state legislative decisions, influence from provider groups, and on cost. Your provider makes recommendations to you based on all of the factors above, but also your own personal and family health history and their own personal experience as someone who has worked in your community with people like you, day in and day out. If they have recently had a young patient diagnosed with cancer, they might encourage their other patients to get screenings earlier than a provider without that experience.
Knowing how these different groups decide on their guidelines can help you decide how to factor that into your own healthcare decision making. The same goes for your provider. If you ever have any questions about how your provider goes about making healthcare recommendations for you, ask them.
Screening guidelines are not “one size fits all”
One major hiccup with screening guidelines issued by groups is that people rarely fit into the neat boxes that these guidelines try to establish. All of the groups mentioned above, and others, issued broad guidelines that can’t possibly apply to every woman in the same way. Black women are diagnosed with breast cancer younger and have a higher mortality rate, yet the official recommendations are the same regardless of racial/ethnic background. Dense breast tissue presents different challenges and questions for people and providers, yet the recommendations are the same. Trans women and men have different hormonal influences, and yet there is no national guideline for their screening (though some cancer centers have recommendations). People with family history of breast cancer also should ideally be screened 10 years younger than when their relative was diagnosed, but this isn’t a part of the well known guidelines.
So, when should I actually start screening and how often?
The best time to start screening for breast cancer is when you and your provider decide is best for you. It is your provider’s responsibility to know the science and all the varying recommendations and apply them to you, and your responsibility is to share your family and personal medical history with them so they can make an informed recommendation. The two of you can then have a discussion about why your provider made that specific recommendation, and if you feel comfortable with it. If you are concerned that insurance coverage would be an issue, your provider or their office can likely help you with appropriate referrals or letters of appeal if recommended tests are denied coverage, and there are free programs throughout the state to help people get screening mammograms. The best age to have this conversation with your provider is whatever age you are now, so talk to your provider about how the two of you will manage your cancer screenings.
PS: There is currently a study underway looking at developing more personalized screening guidelines. If you are interested, check out this post by FORCE.
Photo by National Cancer Institute on Unsplash
