In large part due to lobbying by Cappello's non-profit group, Are You Dense, Connecticut was the first state to pass a bill, in 2009, requiring doctors to include breast density information in mammography reports. Last month Texas passed a similar bill. Bills are pending in New York and a half dozen other states, and federal legislation is expected to be presented in Congress. California's governor Jerry Brown vetoed a breast density notification bill this week, writing, "If the state must mandate a notice about breast density -- and I am not certain it should -- such a notice must be more carefully crafted, with words that educate more than they prescribe."
But groups like Are You Dense are facing big challenges from doctors in nearly every state. In California, the state medical association is lobbying against passage of the bill. Doctors are concerned about the added costs, not covered by insurance companies, of additional testing, such as ultrasounds, which are not scientifically proven to save lives through early detection. They also worry about additional liabilities.
Dr. Jay Brooks, chairman of hematology/oncology at Ochsner Health System in Baton Rounge, La., says breast density is "a real issue. There's no question about it."
The problem lies, he says, in what further steps a woman should take after finding out she has dense breasts.
"What are you going to do next? There is no other screening test that you can do," says Brooks. "Ultrasounds and MRI's are not screening tests. Women can get them, pay for them, but you're opening Pandora's box."
Brooks and other doctors say including breast density information in mammography reports may also cause undue fear, leading women to make choices in their healthcare, such as biopsies, and even mastectomies, that may cause them more harm.
MRIs, he says, "are extremely sensitive, but not specific. They find all sorts of things in your breast that may not be cancerous. That's the dilemma."
"From a scientific standpoint, before we give information, we have to think through what are going to be the healthcare ramifications of this," says Brooks.
The American Cancer Society does in fact recommend annual MRI screenings for women at the highest risk for breast cancer; however, as Kolb points out, "the utilization of ultrasound or MRI to screen in women with dense breasts as the only risk factor has not been recommended by any scientifically authoritative organization.
"Those who are fearful of consequences based on informing women about their breast density should realize that rather than avoiding the issue they need to further educate their patients," Kolb says.
JoAnn Pushkin simply wanted to know the truth. She says she would have been willing to bear the cost of an ultrasound if it had meant detecting her cancer earlier. Seven surgeries, eight rounds of chemotherapy and 30 rounds of radiation later, Pushkin still feels betrayed by a mammogram she now calls "a lie."
"There have been so many really, really bad days, but the worst was sitting with my 16-year daughter and telling her, 'Mom is sick,' after the cancer had spread," Pushkin says. "When I found out this could have been avoided if I'd had that single piece of information…I thought, I need to keep talking about it. This needs to be known."
It's far from certain that if Pushkin or Cappello had found out about their cancer earlier they would have had better outcomes. It's commonly accepted that early detection saves lives, however the medical community has not reached consensus on the effectiveness of screening tests other than mammograms. But Pushkin and Cappello argue that by not being told about their dense breasts and the increased risks, they were never given a choice.
"It's crucial for any human being to know the accuracy of the test they're having," says Kolb. "It's immoral not to have that information…"
For JoAnn Pushkin "life is a time bomb." Her cancer returned this year and she's undergone three more surgeries.
She's now devoting her time to spreading the word about dense breasts and trying to get legislation enacted.
"How do you not do this? How do you not tell women this?" she wonders. "If the medical community isn't going to tell us, who is?"
For more information on dense breasts, visit www.areyoudense.org.