October 24, 2012
In a move that has irked
medical groups and delighted patient advocates, states have begun passing laws
requiring clinics that perform
mammograms to tell patients whether they
have something that many women have never even heard of: dense breast tissue.
Women who have dense
tissue must, under those laws, also be told that it can hide
tumors on a mammogram, that it may
increase the risk of
breast cancer and that they should ask
their doctors if they need additional screening tests, like
ultrasound or
M.R.I. scans.
The issue is pitting angry
patients against the medical establishment. Advocates say women have a right to
know, but medical groups argue that the significance of tissue density is
uncertain and that reporting it may panic women and lead to an avalanche of
needless screening tests and biopsies.
Laws requiring disclosure
have been passed in Connecticut, Texas and Virginia, and most recently in
California and New York, where they will take effect next year. A bill calling
for a federal law has been introduced in the House.
The laws owe their existence
mostly to Nancy M. Cappello, 59, of Woodbury, Conn. She was not told that she
had dense breast tissue until after doctors found an advanced
cancer that mammograms had missed. She
took her story to legislators, and in 2009, Connecticut became the first state
to require that women be told if they have dense breasts and that insurance
companies cover ultrasound scans for those women.
“I want to help other
women,” said Ms. Cappello, formerly the state’s chief of special education. “I
can’t help myself. My cancer should have been detected at a much earlier
stage.”
“Dense” breasts have a
relatively high proportion of glandular or connective tissue, which blocks
X-rays. Non-dense breasts have more fat, which X-rays penetrate easily. Over
all, about 40 percent of women who have mammograms have dense breast tissue. It
is not abnormal, just one of nature’s variations. Younger women are more likely
to have dense tissue, but as many as 25 percent of older women do, too. Density
cannot be judged by touch; it shows up only on mammograms.
For many women, the
legislation will bring about a big change. Though some radiologists already
tell women about density, in most cases the letters sent to patients about
mammogram results do not mention it.
Though some doctors favor
the laws, others resent them, and professional societies of radiologists,
gynecologists and cancer experts have raised medical concerns.
The medical groups say
telling a woman she has dense breasts may not help her and might even do harm
by propelling her into unnecessary tests and treatment. The groups argue that
identifying dense breast tissue is subjective, and so two doctors reading the
same mammogram may rate the tissue differently. And information about density
may confuse women, scare some needlessly and give others a false sense of
security, the groups say.
Detractors also warn of a
flood of phone calls to already-overburdened doctors and a demand for
additional tests that will strain the health care system. There is already a
shortage of experts in ultrasound screening, and many doctors simply bristle at
the idea of laws controlling what they tell patients.
“I’m always worried when
politicians start legislating the medical conversation, especially when it’s a
medical conversation where the experts don’t know what needs to be said,” said
Dr. Otis Brawley, the chief medical officer and executive vice president of the
American Cancer Society and a professor
of medicine at Emory University in Atlanta.
But Dr. Brawley said
doctors should tell women if they have dense breasts, and he freely admitted
that his position seemed contradictory.
“I’m saying I object to
legislation that says doctors should have a conversation with their patients
that I believe they should have with their patients,” he said.
The National Cancer
Institute calls dense breasts “a strong risk factor for developing breast
cancer.” Various studies have estimated that compared with other women, those
with dense breasts are two to six times as likely to develop breast cancer. The
reason is not known. But dense breasts have more milk ducts and lobes, where
most cancers form, so some researchers think the added risk may come from
having more of that tissue.
On mammograms, dense
breasts look white, and so does cancer, so the tissue can hide tumors. Fatty
breasts show up mostly black, so tumors stand out.
Studies have found that
when women with dense breasts were given mammograms and then ultrasounds, the
ultrasound found tumors that the mammograms missed — but also produced many
false positives that led to biopsies.
Studies of women with
dense breasts that were published in June in the journal Radiology and in April
in The Journal of the American Medical Association found that for every 1,000
women screened, adding ultrasound found three to five cancers that mammograms
missed. But in one study, 63 biopsies or other invasive procedures were
performed to find three tumors.
M.R.I. exams can also find
tumors that mammograms miss, but they produce even more false positives.
Despite its shortcomings,
mammography does find some tumors in women with dense breasts — including some
that ultrasound misses — so doctors emphasize that these women should not skip
mammograms.
No studies have been
conducted to determine whether finding the hidden cancers with ultrasound or
M.R.I. scans saves women’s lives. In theory, the tumors found could be the kind
that never would have killed the patients anyway. The United States Preventive
Services Task Force, which makes recommendations about screening tests, has not
given any advice on
breast ultrasound.
This year, 226,870 new
cases of breast cancer and 39,510 deaths from the disease are expected in the
United States.
Dr. Thomas Kolb, a
radiologist in Manhattan, said that like mammography, ultrasound can find early
cancers and therefore should reduce the death rate.
“It doubles the detection
rate in women with dense breasts,” he said.
But Dr. Carol H. Lee, a
radiologist at Memorial Sloan-Kettering Cancer Center in New York and a
spokeswoman for the American College of Radiology, said that while there is an
increased overall cancer risk for women with dense breasts as a group, it is not
known whether the risk is borne equally by every woman in the group. So the
best advice for an individual woman is not clear.
Dr. Lee said that the
radiology group did not oppose the idea of informing women but did not think it
should be mandated by law. The group issued a
statement warning of “possible harms and
unintended consequences” of the state laws, including confusion, “undue
anxiety,” a loss of faith in mammograms and “demands for additional
non-mammographic screening.”
Some insurers may not
cover the additional tests, so women who cannot pay out of pocket may not be
able to afford them. Even when insurance does pay, the reimbursement rate is
often so low that many doctors say it does not come close to covering the time
and expertise needed to perform and interpret the exams. In addition, while
mammography centers must meet strict standards, there are no such requirements
for ultrasound screening, so the quality may vary.
Ms. Cappello, the woman
who started the
movement to inform patients, began having yearly mammograms at age
40. In 2004, when she was 51, her doctor felt a lump in her breast — only six
weeks after a mammogram had looked normal. Even after the lump was detected,
mammography still could not find it. Only then was Ms. Cappello told that she
had dense breast tissue. The cancer had already spread to 13 lymph nodes. She
needed a
mastectomy,
chemotherapy, radiation and hormone treatment.
Ms. Cappello was outraged.
If she had known she had dense breast tissue, she said, she would almost
certainly have had an ultrasound exam. She believes that the
tumor would have been found earlier,
perhaps even before it had begun to spread.
“It was probably growing
for four or five years,” she said, “and it was missed.”
Source:
http://www.nytimes.com/2012/10/25/health/laws-tell-mammogram-clinics-to-address-breast-density.html?pagewanted=all&_r=0
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