Pushkin and Cappello's mammography results both revealed they had "extremely dense" breast tissue, but neither women was told this. In almost all states, doctors are not required to let patients know if they have dense breasts.
"The more dense a woman's breast is, the less likely mammograms would find breast cancer," says Dr. Thomas Kolb, a radiologist specializing in breast cancer detection based in New York. "In women with grade 4 dense breasts -- the most dense -- mammograms miss 59 percent of breast cancers."
Kolb co-authored a study in 2002 examining whether a mammogram coupled with an ultrasound examination in women with dense breasts could increase detection of invasive breast cancers before a mass could be felt. The results, which looked at screening sessions for more than 11,000 women, found that the ultrasound increased the number of woman diagnosed with cancers by 42 percent.
Breast density is determined by factors such as hormone levels, age and ethnicity (Asian women typically have denser breasts). Density is measured on a 4-point scale, with 1 being predominantly fatty, less dense breasts to 4 being extremely dense. Most women fall between 2 and 3 in the scale.
JoAnn Pushkin and Nancy Cappello say if they had been told by their doctors early on that they had extremely dense breasts, they would have requested further testing even if it came at their own expense. While MRIs and ultrasounds are not routinely used as screening tools for early detection of breast cancer, the women feel they lacked knowledge to make their own choices.
"If you're a woman with dense breast tissue you don't have the same access to early detection and that outrages me," Cappello says. "That's a blatant injustice."
There are no federal laws mandating that physicians inform their patients of their breast density or recommend additional screening, even though physicians have the information. And many women simply don't know to ask.
"We're trying to change that," says Cappello. "Maybe knowing at an earlier stage wouldn't have made a difference in the outcome, but to me it was critically important information. I never had that opportunity."