Earlier this year, Caryn Hoadley received an unexpected letter after a routine mammogram.
The letter said her mammogram was clean but that she has dense breast tissue, which has been linked to higher rates of breast cancer and could make her mammogram harder to read.
鈥淚 honestly don鈥檛 know what to think about the letter,鈥� said Hoadley, 45, who lives in Alameda, Calif. 鈥淲hat do I do with that information?鈥�
Millions of women like Hoadley may be wondering the same thing. Twenty-one states, including California, have passed laws requiring health facilities to notify women when they have dense breasts. are considering similar laws and a nationwide version has been introduced in Congress.
The laws have been hailed by advocates as empowering women to take charge of their own health. About 40 percent of women have dense or extremely dense breast tissue, which can obscure cancer that might otherwise be detected on a mammogram.
But critics say the laws cause women unnecessary anxiety and can lead to higher costs and treatment that doesn鈥檛 save lives or otherwise benefit patients.
Catharine Becker of Fullerton, California, was diagnosed with stage 3 breast cancer at 43 despite having a clean mammogram. The mother of three didn鈥檛 know she had dense breast tissue until after she was diagnosed (Photo by Heidi de Marco/Kaiser Health News).
Typically, the laws require a notice be sent to a woman if she has dense breast tissue seen on a mammogram. Some notifications suggest that a woman talk to her doctor about additional screening options.
But in some states, not including California, the laws go further by requiring health providers to offer a supplemental screening like an ultrasound to women with dense breasts even if their mammograms are clean. Connecticut, Illinois and Indiana even for screening ultrasound after mammography if a woman鈥檚 breast density falls above a certain threshold.
Otherwise insurers do not routinely cover supplemental screening for women with clean mammograms, even if they have dense breasts. The Affordable Care Act does not require it.
The problem, Esserman says, is that no medical consensus exists on whether routine supplemental screening for women with dense breasts is worthwhile.
A recent using computer modeling found that offering an ultrasound to women with dense breasts after a clean mammogram would not significantly improve breast cancer survival rates but would prompt many unnecessary biopsies and raise health care costs.
Dr. Jane Kakkis, a breast cancer surgeon in Fountain Valley, California, supports dense breast notification laws (Courtesy of Dr. Kakkis).
Dense breast notification laws have added another layer of complexity to the long-running and often emotional debate over how best to screen women for breast cancer.
Breast cancer is the second most common form of cancer among American women, behind skin cancers, and the second leading cause of cancer death. An estimated 231,840 U.S. women will be diagnosed with invasive breast cancer in 2015, according to the American Cancer Society.
About each year in an attempt to find signs of cancer early enough to treat it successfully. Emerging technologies like , a 3-D digital X-ray of the breast, may become cheap enough to replace conventional mammography and make the notification laws irrelevant, but their widespread use is years away.
Edith Santos, Becker鈥檚 mother, was diagnosed with breast cancer at 56. This picture was taken two weeks after her lumpectomy (Becker Family Photo).
For a long time, women were advised to start yearly mammograms at about age 40, but in 2009, the U.S. Preventive Services Task Force issued controversial that most women without a family history of breast cancer or other risk factors should wait until age 50 to begin mammograms, and repeat them every two years. Patient advocates decried the recommendations as 鈥渞ationing鈥� preventive health care for women.
In the meantime, Nancy Cappello, an education administrator from Connecticut, was pushing to pass what became the nation鈥檚 first dense breast notification law. Just two months after a clean mammogram, she had been diagnosed with breast cancer that had spread to her lymph nodes.聽 She had extremely dense breasts, something her radiologist knew but Cappello was not told.聽Dense breasts have more glandular and fibrous tissue, which block the X-rays used in mammograms more than fatty tissue does.
Eventually, she founded the patient advocacy organization 聽and took her campaign national.
鈥淭here鈥檚 no evidence that we鈥檙e scaring women. Most women I鈥檝e talked to are very happy to get these notifications,鈥� said Cappello, whose cancer is in remission. 鈥淲e want to make informed decisions鈥o have a better chance of surviving the disease.鈥�
Dr. Jane Kakkis, a breast cancer surgeon in Fountain Valley, Calif., supports dense breast notification laws and testified in front of Nevada lawmakers before that state passed its law in 2013. Like Cappello, she dismisses concerns that the notification laws will cause undue fear.
鈥淵ou have no idea what fear is until you have a cancer that鈥檚 already spread to your lymph nodes,鈥� Kakkis said. 鈥淧atients will say in disbelief, 鈥榖ut I just had a mammogram and it was normal.鈥� They can鈥檛 believe how advanced it is. Dense breast notification is bringing up a whole conversation about risk that wouldn鈥檛 come up otherwise.鈥�
Caryn Hoadley, 45, from Alameda, California, with her two children. Hoadley received a letter that said her mammogram was clean but that she has dense breast tissue, which has been linked to higher rates of breast cancer (Courtesy of Poppins Photography).
One of Kakkis鈥� patients, Catharine Becker of Fullerton, was diagnosed with breast cancer six years ago. She鈥檇 felt a lump three months after a clean mammogram. Because Becker had a family history of breast cancer 鈥� her mother died from the disease 鈥� she started mammograms early, at age 35. But they never showed any cancer. Until she was diagnosed, she didn鈥檛 know she had dense breast tissue.
鈥淭o be told at age 43 I had stage 3 cancer after a clean mammogram was really a shock,鈥� Becker said, crediting her survival to breast self-exam and her doctors. 鈥淚鈥檇 rather have more information than less.鈥�
Women with moderately dense breasts have about a 20 percent higher chance of getting breast cancer than women who don鈥檛. Those with the highest-density breasts have about double. To put these numbers into perspective, if an average 50-year-old woman has a of getting cancer in the next 10 years of her life, a woman with the highest density breasts would have a 4.76 percent chance of being diagnosed.
New ways of classifying dense breast tissue could put even more women in the category of receiving dense breast notifications, said Dr. Priscilla Slanetz, who recently wrote a questioning the effectiveness of dense breast notification laws.
One reason she wrote the article, she said, was 鈥渋n our state [Massachusetts] very few of our primary care providers have any knowledge about breast density and strengths and limitations of these different tests鈥� for supplemental screening.
The same may hold true in California, where a found that only half of them had heard of the state鈥檚 2013 dense breast notification law and many felt they didn鈥檛 have enough education to address what breast density meant for their patients.
On this point, both supporters and critics of the laws agree: doctors need better tools to help their patients identify their individual cancer risks.
To that end, specialists are developing more personalized screening protocols that result in low-risk women being screened less often than higher-risk women.
鈥淚t鈥檚 not rationing, it鈥檚 being rational,鈥� said Esserman, who has a $14 million grant to study the issue.聽聽 鈥淲e should be testing different approaches for screening women with dense breasts, and then pass legislation once we know what to do.鈥�