Ever heard of H.R. 3404?
Most women haven’t, and that, my friends, is the problem.
H.R. 3404, formally known as the Breast Density and Mammography Reporting Act of 2013, would require doctors to inform a patient if they have dense breast tissue and recommend supplemental screening, and would break the silence on what advocates group call breast health’s “best-kept secret.”
Despite what we are often told, one of the most well-established predictors of breast cancer risk is having what is known as dense breast tissue. About 40 percent of breasted people have dense tissue, which means that their breasts are comprised of more fibrous and connective tissue rather than fat. That percentage is higher among younger people.
Problems arise when people start getting their recommended mammograms to screen for cancer. Dense tissue and tumors both show up white on mammograms, so mammograms cannot detect tumors in denser tissue. A breast MRI or an ultrasound is required to detect tumors in dense tissue.
However, many radiologists do not inform patients that they have dense tissue or that mammograms cannot detect tumors in dense tissue. Fourteen states have laws mandating that radiologists and doctors provide patients with this information, but since there is no federal requirement, many people are left in the dark, with very few doctors and radiologists informing women of their risk.
According to an article in the Wall Street Journal in 2011, an executive with the Radiological Society of Connecticut lobbied against her state’s bill to require informing patients because “it would increase costs and anxiety without much benefit,” a view which many similar lobbyists share.
However, advocacy groups such as Are You Dense?, which was founded by a cancer survivor whose stage 3c breast cancer was not detected by a mammogram, argue that people have a right to make informed decisions about their medical treatments and exams. A study commisseioned by Are You Dense? found that 93% of the respondents said that, “if informed of their dense breast tissue would elect for additional screening as a mammogram is compromised due to dense breast tissue—missing cancer at least 40% of the time.”
Insurance companies and radiologists sometimes cite cost as another factor in providing patients with information. While breast MRIs do cost significantly more than a mammogram—$716.83 compared to $81.35, according to the American College of Radiology—a breast ultrasound costs on average less than $20 more than a mammogram.
While H.R. 3404 has been referred to the House Committee on Energy and Commerce for right now, there are things those of us with breasts—and those of us who care about someone with breasts—can do to protect ourselves and those we care about.
1. Always, always, ALWAYS do your monthly self-exams. You can do them in the shower, in front of a mirror, and/or laying down in bed. Start by moving your fingers around the entire breast and armpit areas in circular motions. Do it with your arms at your side and with your arm raised above your head. In front of a mirror, make sure to check the appearance of your breasts. Note any changes in feel or appearance and get them checked out by a health care provider as soon as possible. EVERY MONTH. NO EXCEPTIONS.
2. Get regular mammograms when your doctor recommends them (usually around age 40), which can be free or at a discounted price through California’s Breast Cancer Early Detection Program. Planned Parenthood also offers some discounted breast exams and screening services.
3. Request a report from your referring doctor (Are You Dense? specifies that it should be generated by the radiologist rather than only a “form letter”).
4. If your report indicates that you have dense tissue, you can request additional screening. In some states, like Massachusetts, require insurance to cover ultrasounds if mammograms detect dense tissue, but everyone’s insurance is (unfortunately) different. There are a number of organizations that provide free or discounted breast ultrasounds though, since mammograms are a staple in breast cancer care, discounted ultrasounds can be harder to come by than mammograms.
Even though hundreds of thousands of American women will be diagnosed with cancer in 2014, many of them probably won’t be told that their dense breast tissue was a factor in a missed detection or in their increased risk of developing it. To us here at The Scripps Voice, it is unacceptable that specialists would rather spare patients the “anxiety” of having to do a second test than allow them to make their own choices and know what the radiologists are really looking at when they perform a mammogram on their bodies. We should be long past the days when some arbitrary person gets to decide whether a female-bodied person can “handle” certain information regarding their own health. Until that day comes, we will have to be our own advocates and advocates for one another.