Oct. 5, 2011— -- JoAnn Pushkin did what any dutiful, informed, health-conscious women over 40 would do. She had annual mammograms and performed monthly self-exams on her breasts. Year after year, she'd receive in the mail what she refers to as a "happygram" -- a report with the same six words: "Normal/Negative -- No evidence of cancer." She'd breathe a sigh of relief each time. No questions asked.
Mammograms are widely accepted as the best scientifically proven screening for early detection, and while there are stories of women whose breast cancer was not detected in a mammogram, Pushkin had no reason to believe she was at higher risk than anyone else. She had no family history. She swam every day, ate organic foods and never saw a symptom.
What she didn't know is that she was among the 40 percent of women with dense breasts, and that made her four to six times more likely to get cancer. "Dense" breasts have a higher proportion of connective tissue, as opposed to fatty tissue – hence the term. It also made all those annual mammograms she was receiving "practically useless," she says, because mammograms miss 40 percent or more of tumors in women with dense breasts.
But the 51-year old Pushkin didn't know any of this.
So, in 2005, when she felt a lump during a self-exam, she was not overly concerned.
A writer based in New York and mother to a teenage daughter, Pushkin felt confident the lump was "nothing."
"I had it checked just in case," Pushkin says.
The more recent mammography did not detect the lump, even though she could feel it. When a lump is palpable, doctors usually order additional testing. A follow-up ultrasound detected the lump. It was Stage II breast cancer.
The shock became nothing less than surreal when Pushkin heard her doctor say, "'Well, you have dense breast tissue. It would be difficult for us to find the lump on a mammogram.' I said, 'Wait. What?'" It was the first time she heard the term, even though her doctor would have known about her breast density from her first mammogram.
Once home, she Googled "dense breasts," and was shocked to find out that the condition made it four to six times more likely she'd have breast cancer.
Like 95 percent of women over the age of 40, Pushkin did not know her breast density.
"By the time you can feel a lump, it's not 'early stage' anymore," Pushkin says.
Nancy Cappello, an education consultant from Connecticut, has a similar story. After more than a decade of yearly mammograms that all came back with a "happygram," 58-year-old Cappello's gynecologist felt a thickening of her breast tissue during her annual exam. A mammogram did not detect the mass, but an ultrasound did. She had Stage IIIC breast cancer.
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."
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.