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A doctor reviews a digital mammogram, pointing to a possible cancer. Credit: National Cancer Institute. |
By Laura Newman, DXS contributor
In a victory for the dense-breast patient movement, Governor
Jerry Brown (D-CA) signed legislation last week requiring that doctors who
discover that women have dense breasts on mammography must inform women that:
§ dense breasts are a risk factor for breast cancer;
§ mammography sees cancer less well in dense breasts than in normal breasts; and
§ women may benefit from additional breast cancer screening.
The California law goes into effect on April 1, 2013. It follows four states (Connecticut, Texas, Virginia, and New York) with similar statutes. All have enjoyed solid bipartisan support. Rarely do naysayers or skeptics speak up.
§ dense breasts are a risk factor for breast cancer;
§ mammography sees cancer less well in dense breasts than in normal breasts; and
§ women may benefit from additional breast cancer screening.
The California law goes into effect on April 1, 2013. It follows four states (Connecticut, Texas, Virginia, and New York) with similar statutes. All have enjoyed solid bipartisan support. Rarely do naysayers or skeptics speak up.
Young women who are leading the charge often bring lawmakers the
story of a young constituent, diagnosed with a very aggressive, lethal cancer
that was not shown on film-screen mammography. The Are You Dense? patient advocacy group engages
patients on Facebook, where women share their experiences with breast cancer,
organize events, and lobby for legislation. Individual radiologists work with
the advocacy groups, but many radiology groups and breast surgeons do not
endorse these laws.
A Closer Look at Breast Cancer Data
Living in an age when information is viewed as an entitlement,
knowledge, and power, many physicians find it hard to argue against a patient’s
right to know. Can sharing information be a mistake? Some epidemiologists think
so. Otis W. Brawley, MD, FACP, Chief Medical & Scientific Officer, American
Cancer Society, says: “I really worry when we legislate things that no one
understands. People can get harmed.” Numerous issues have to be worked out, according
to Brawley. For one, he explains: “There is no standard way to define density.”
Additionally, “even though studies suggest that density increases the risk of
cancer, these cancers tend to be the less serious kind, but even that is open
to question,” Brawley says. “We in medicine do not know what to do for women
who have increased density.”
A study of more
than 9,000 women in the Journal of the National
Cancer Institute revealed that women with very dense breasts were no
more likely to die than similar patients whose breasts were not as dense. “When
tumors are found later in more dense breasts, they are no more aggressive or
difficult to treat,” says Karla Kerlikowske, MD, study coauthor, and professor
of medicine and epidemiologist at the University of California San Francisco.
In fact, an increased risk of death was only found in women with the least
dense breasts.
The trouble is what is known about dense breasts is murky. Asked
whether he backs advising women that dense breasts are a risk factor for breast
cancer, Anthony B. Miller, MD, Co-Chair of the Cancer Risk Management
Initiative and a member of the Action Council, Canadian Partnership Against
Cancer, and lead investigator of the Canadian National Breast Cancer Screening
Study, says: “I would be very cautious. The trouble is people want certainty
and chances are whatever we find, all we can do is explain.”
Women in their forties, who are most likely to have dense
breasts (density declines with age) may want to seek out digital mammography.
In studies comparing digital mammography to film-screen mammography in the same
women, digital mammography has been shown to improve breast cancer detection in
women with dense breasts. Findings from the Digital Mammographic Imaging Screening
Study, showed better breast cancer detection with digital mammography. But
digital mammography is not available in many areas. Moreover, Miller
explains: “We do not know if this will benefit women at all. It is very
probable that removal of the additional small lesions will simply increase
anxiety and health costs, including the overdiagnosis of breast cancer, and have
no impact upon mortality from breast cancer.”
Additional imaging studies sound attractive to people convinced
that there is something clinically significant to find. But as I pointed out in my last post, many
radiologists and breast physicians contend that there is no evidence that
magnetic resonance imaging or any other imaging study aids breast cancer
screening in women with dense breasts. Brawley notes: “These laws will
certainly lead to more referral for MRI and ultrasound without clear evidence
that women will benefit (lives will be saved.) It’s clear that radiologists
will make more money offering more tests.” Miller adds: “A number of doctors
are trying to capitalize on this and some of them should know a lot better.”
Many Advocates Question More Tests, Statutes
Even though the “Are You Dense?” campaign has been instrumental
in getting legislation on the books across the county, other advocacy groups
and patient advocates want research, enhanced patient literacy about risks and
benefits of procedures. Many recall mistakes made that led women down the path
of aggressive procedures. In that group is the radical Halsted mastectomy, used
widely before systematic study, but once studied, found no better than
breast-conserving surgery for many cancers, and bone marrow transplants, also
found to be ineffective, wearing, and costly.
Jody Schoger, a breast cancer social media activist at @jodyms
who engages women weekly on twitter at #bcsm, had this to say on my blog about
the onslaught of additional screening tests:
“What is needed is not another expensive modality… but
concentrated focus for a biomarker to indicate the women who WILL benefit from
additional screening. Because what’s happening now is an avalanche of
screening, and its subsequent emotional and financial costs, that is often far
out of proportion to both the relative and absolute risk for invasive cancer. I
simply don’t think more “external” technology is the answer but one that
evolves from the biology of cancer.”
Eve Harris @harriseve, a proponent of patient navigation and
patient literacy, challenged Peter Ubel, MD, professor of business
administration and medicine, at Duke University, on his view of the value of
patient empowerment on the breast density issue. In a post on Forbes, replicated
in Psychology Today,
Ubel argued that in cases where the pros and cons of a patient’s alternatives
are well known, for example, considering mastectomy or lumpectomy, patient
empowerment play an important role. “But we are mistaken to turn to patient
empowerment to solve dilemmas about how best to screen for cancer in women with
dense breasts,” he writes.
Harris disagrees, making a compelling case for patient
engagement:
“I think that we can agree that legislative interference with
medical practice is not warranted when it cannot provide true consumer
protection. But the context is the biggest culprit in this
situation. American women’s fear of breast cancer is out of
proportion with its incidence and its mortality rate. Truly empowering
people—patients would mean improving health literacy and understanding of
risk…”
But evidence and literacy take time, don’t make for snappy
reading or headlines, and don’t shore up political points. Can we stop the
train towards right-to-inform laws and make real headway in women’s health? Can
we reallocate healthcare dollars towards effective treatments that serve
patients and engage them in their care? You have to wonder.

The opinions in this article do not necessarily conflict with or reflect those of the DXS editorial team.
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