US women's attitudes to false positive mammography results and detection of ductal carcinoma in situ: cross sectional survey
BMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7250.1635 (Published 17 June 2000) Cite this as: BMJ 2000;320:1635
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EDITOR - By approaching mammography with the question - what do women
want? - the paper by Schwartz et al1 leads into the question - what do
women get? Among other things, they get an ever increasing likelihood of
receiving the malignant diagnosis DCIS (ductal carcinoma in situ). Women
are unfamiliar with DCIS, and for several reasons, physicians' explanation
of the risk conferred by this diagnosis has serious limitations. One
reason for these limitations is that non-invasive breast disease has
always prompted the simplistic question from clinicians: is this lesion
cancer or isn't it? - followed by the simplistic answer from pathologists
asserting that the lesion either is or isn't cancer. Any attempt by a
pathologist to explain that a lesion is a poorly defined predisposition to
cancer rather than a benign or malignant lesion has been an admission of
incompetence. Pathologists who knew that they didn't know whether a lesion
was benign or malignant sent cases to consultants who didn't know that
they didn't know. Diagnoses for intraductal lesions were molded to fit the
benign malignant paradigm of breast disease.
Unfortunately, the disparity between the name DCIS (true positive) and the
outcome for most patients (false positive) has left even physicians
confused, and therefore physicians have had difficulty explaining DCIS to
patients. Patients and physicians have usually concluded that they face a
choice between the unpleasant costs of treating early breast cancer and
the horrible costs of late breast cancer, and they made every attempt to
avoid the latter.
If future patients are to get the information that they need to make
rational decisions about intraductal lesions, we should make two changes
in our approach to the lesions currently lumped as DCIS. First, most
patients should be treated in carefully designed trials, and second, the
malignant label should be abandoned. In an era when large numbers of
biopsies reveal predispositional histology with a complex probabilistic
relationship to outcome, it is not acceptable to use alarming terminology
to label risk derived from under powered studies.2 Women are very serious
about avoiding advanced breast cancer, and we should be equally serious
about not burdening them with misinformation and anachronistic tissue
labels. Perhaps at some point the cost benefit ratio of our recent efforts
to identify DCIS will become clear, but calculating this ratio must await
outcome studies that demonstrate just how different some lesions currently
labeled DCIS are from the more common condition BIS (breast in situ).
Elliott Foucar pathologist
Department of Pathology
Presbyterian Hospital
Albuquerque, NM 87102
1 Schwartz LM, Woloshin S, Sox HC, Fischhoff B. US women's attitudes
to false positive mammography results and detection of ductal carcinoma in
situ: cross sectional survey. BMJ 2000;320:1635-1640. (17 June)
2. Page DL, DuPont WD, Rogers LW, Jensen RA, Schuyler PA. Continued
local recurrence of carcinoma 15-25 years after a diagnosis of low grade
ductal carcinoma in situ of the breast treated by biopsy only. Cancer
1995;76:1197-2000.
Competing interests: No competing interests
Schwartz`s et al`s (1) paper was all the more interesting because of
the availability of comments from peer reviewers. They, like us,
questioned the relevance of its findings to an international audience.
Approaches to breast screening in the US are different from those in, for
example, the UK, so does this paper add anything useful?
Screening mammography in the US is mainly recommended annually or
biannually from the age of 40 years(1). A US website (2) states
`Beginning at age 20, get screened regularly` and `If you are between ages
20 and 39 Get a clinical breast exam every 1-3 years`; `If you are between
ages 40 and 49 years Get a clinical breast exam every year; `If you are
aged 50 or older Get a mammogram and clinical breast exam every year`.
The UK NHS breast screening programme is for women aged 50 years and
over, who are offered screening by mammography every 3 years until they
are 65 years old; then they can continue screening if they self-refer.
The website of the UK Cancer Research Campaign (3) mentions screening only
in the context of the national screening programme, but explains how women
can be `breast aware` and advises them to see their doctor if they notice
any of the changes listed on the website. The Chief Medical Officer in
England has written to GPs, and others, that there is `no evidence to
support the efficacy of breast examination by health professionals of the
well woman` and `palpation of the breast either by medical or nursing
staff should not be included as part of routine health screening for
women`(4).
Given the very different approaches to screening, are the results of
Schwartz`s et al`s US paper relevant to the UK? Could the differences be
influenced by the way in which health care is funded in these two
countries?
Also, can conclusions be drawn for women in general when some groups
were excluded from the study? The subjects of Schwartz`s et al`s study
were wealthier and better educated than the general US population and
almost all were white(1). But general conclusions are made about what
education is needed. This point applies to much research that is carried
out. One way in which people are marginalised is that most research
methods systematically exclude some groups as subjects and so their needs
or knowledge are not known.
References:
1.Schwartz, L. et al. US women’s attitudes to false positive
mammography results and detection of ductal carcinoma in situ: cross
sectional survey. BMJ 2000; 320: 1635 – 1640. (17 June 2000)
2..
http://www.yourcancerrisk.harvard.edu/breast/breast_screen
ing.htm.
3.
http://www.crc.org.uk/cancer/Aboutcan-common2.html
4.Department of Health. Clinical Examination of the Breast. London:
Department of Health, 1998 (PL/CMO/98/1; PL/CNO/98/1).
Competing interests: No competing interests
Dear Editor,
Schwartz et al1 have produced a cross sectional study "to determine
women's attitudes to and knowledge of both false positive mammography
results and the detection of ductal carcinoma in situ after screening
mammography." The results show women are aware of and have good tolerance
of false positive results. They also demonstrate most women do not know
that screening can detect non-progressive breast cancer.
The work is valuable as it highlights how women feel about these
problems. Nevertheless, we feel it is difficult to translate the findings
into clinical practice due to the limitations in the sampling procedure.
The study included women who are better educated than the general
population and underrepresented women from all ethnic minorities and lower
socioeconomic groups.
We concur with the authors conclusion that more time should be spent
counselling on the possibility of non-progressive breast cancer. Yet, in a
sample representing only well educated women, it is not universally
conclusive that less time should be spent explaining to all patients the
possibility of false positives in screening.
Yours sincerely
Julie Christie, Caroline Long, Elizabeth Nevill, Josephine Vila
We would like to acknowledge the assistance of Dr Tanja Pless-Mulloli
1Schwartz LM, Woloshin S, Sox HC, Fischhoff B, Welch HG
US women's attitudes to false positive mammography results and detection
of ductal carcinoma in situ: cross sectional survey. BMJ 2000 vol 320:1635
-40.
Competing interests: No competing interests
Re: http://www.bmj.com/cgi/content/full/320/7250/1635
I read your survey with interest, especially in re DCIS. My
prevailing thought was "women know their bodies." Now, receiving over 100
e-mails/week from women through my web site, I consistently think, "I've
heard it all!" No I have not. There's always more astounding situations
being presented, and women begging for help, information, advice, medical
referrals, options, and even informed consent in re clinical trials when
they don't understand one word of the "Release!" Thank God these women
have enough gumption left in their torn psyches to still reach out.
The survey does not evidence an awareness of the most recent
advances in the diagnosis, treatment and, indeed, changing clinical
advances regarding "DCIS" IT DOES SPREAD! In fact, we must find another
term for this because the present one is erroneous and no longer
applicable to our contemporary research sophistication.
However, the fragmentation of medicine, and research, at least in the
U.S. means the majority of U.S. doctors lag far behind their pateints when
it comes to information. Since NIH came out with the cytokeratin staining,
and the increase in SLND the monster that many women are unknowingly
walking around with is micrometasis! Its only a matter of time until we
bury our neglect, unless they ask NIH to secure their pathology and re-
read it to look for micromets (we are doing the same thing with the STAR
trials . . . the chemical structure of Tamaxofin itself would give one a
clue that it will begin to be interpreted by the homo sapien body as
estrogen after a few years but we keep up the trial when Canada has a
similar drug which in human trials has none of the side effects of
Tamoxafin.
The paper posits that the number of false positive mammogam readings
are something women should keep in the front of their minds when they have
a mammogram! False positives do not create near the emotional havoc that
false negatives do, and women are well aware of that. To recieve a false
positive certainly has its impact on the patients, and his/her loved ones
but not nearly that of the false negatives. And, the false negatives are
not discovered until it is too late for the pateint to have any
retaliation (especially in Texas due to tort reform - and the offenders go
right on making the same errors over and over, and their mistakes die!).
In fact, women are fortunate if they get a reading by an FDA approved
breast radiologist at all, and rarely an objective 2nd reading. What we
are facing is an intended negligence, by permitting non-FDA approved
radiologists to read and interpret mammograms, perform subsequent readings
without prior films, and be legally forbidden to even consider reporting
"Prior films unavailable!" For example, a patient asked another
radiologist to do a second reading (unfortunately in the same group),
which he did, and his findings were "obviously malignant," and performed a
biopsy, revealing Stage III comedocarcinoma, two 2.4cm and larger sites of
longitudinal calcifications, also missed by the prior annual mammogram.
Interesting was that radiologist #1 issued on his same letter, at a later
date, "Second Reading: Obviously malignant. Recommended immediate
biopsy," the day after the biopsy was performed by his colleague - who by
the way, did not issue a Second Reading report, OR sign one thing! Yes,
the receiving surgeon did retort, "WHAT is THIS?"
This is incredible medical negligence at best - Whatever happened
to the practice nurses are educated to do, read, check everything three
times before doing anything? The upshot of this case was the woman was
told she would have to go "to the coast" to get a SLND! Again, untrue;
however, it would get the patient out of town!
The situation is so bad in the U.S. that imammogram.com has begun and
the bloke behind it is building on the fact that women do not get 2nd
objective readings (he polled a NM conference and "got one hand raised -"
his!) Thus his 'running' their mammogram through the CAD for a $75. fee
will be their answer; indeed, he is giving women false hope, and pray God
FDA will stop him. Thus far, he has not given me, nor STAR committee
members I've enlisted any information as to his equipment, etc. He's
probably doing a trial; however, the CAD has an incredibly high false
positive rate, and leaves us with "what DO we biopsy?" And, were it truly
beneficial it moves equal care for all one step further away!
With breast cancer escalating at the rate it is, women must be made
into aggressive health care consumers, and realize that an archaic cell is
unpredictable! Once it begins it no longer communicates with the
surrounding cells, and goes its own way! Hence, women and men need an
advocate in today's "system." It benefits all concerned.
We have no anatomical mapping of the ductal system of the breast so
what in the world are we doing, or where did we ever begin to believe
that carcinoma in a breast duct would not spread? Any one with four+
years of biology knows better than that.
The pool from which this study was drawn, in our society today, is
not only unimpressive but it is unfair. Not that the caucasion, middle
class is any more health educated, however, they tend to answer as
expected. We have virtually no information on breast cancer and the black
female, yet every woman descended from one woman in Africa more than
400,000 years ago. It is critically important that we move in this
direction as soon as possible, because we have that DNA.
I question where you have the data to support the statement that
"Most women also recognised that health promoting behaviours such as not
smoking, exercising regularly, and eating a low fat diet were more
beneficial than mammography in prolonging life, which is true for the
average 60 year old woman.....Monthly breast self examations..." The pool
in the survery are more exposed to media hype regarding "Keeping Fit!"
Researchers in Japan, Norway, etc. are baffled by the increase in
heart disease when they put women on anti-carcinogenic diets, and vice
versa. And, the term "low fat diet," certainly you do not mean to include
the critically important Omega 3s. When we permit women to believe that
the BSE is the end all and be all (how many women have you heard say, "I
should have been doing my BSE every month.") when we've found that the
small tumors and calcifications are more lethal? Let us not continue to
blame the victim.
It is my concern that generalizations need to be done away with.
Women are not being well cared for, and never have been, The survival
rates have been skewed, and this is not new information to the ACS, NCI,
or Sloan Kettering - at the 1998 annual cancer conference by the Center
for Mind Body Medicine this was brought out, to the point that it was
stated (there are recordings available) there's been no reduction in
cancer deaths in the last forty years.
Diet, exercise, preventive health care are important aspects of
achieving well-being; however, one must be specific and up to date in what
is meant by that phrase. We are now saying shorter periods of intense
exercise is as good as the 20-30 minutes pounding away on a gym floor, or
running or biking - and certainly on the joints of a 60 year old women!
We know know that diet is best with a high Omega 3 content, and it helps
to talk about fats in specific terms as being olive oil, canola oil (not
high in Omega 3 but effective in loweing BP), vs partially-hydrogenated
fats, animal fats, etc. Specifics are what women need, and the men, as
well. We have to long skidded along with generalized statements,
'reserach' papers preaching to the choir. Instead of actively getting out
in communities and speaking directly to women, we have banquets, and
marathons, and cocktail parties and beat our chests and ask why isn't
something being done about cancer, when we must realize that the fish rots
from the head down. . . the medical profession must change its male
medical model of care, realize payment as a requirement for patient care
is a conflict of interest, and to have a society than is non-carcinogenic
is more important than guessing games, and maintaining decades old
thinking.
Another woman was twice informed her pathology was "benign," in 1995
and 1998, in a highly respected SW academic center; NIH in 1998 proved the
1995 mass removed to be malignant; a move to another city proved the 1998
surgery was indeed malignant. This is not unusual! . It is happening too
often to too many women, and it has to stop. Women must not be lulled
into passivity by terms such as "false positives," and "life style" being
better than mammography, when mammography is not usually performed the way
it should be in the first place. If the FDA would remove the medical
licenses of the radiologists who are
reading (indeed, mis-reading, if reading at all) mammograms, without FDA
Approval we'd be light years ahead in this battle against breast cancer.
When the medical profession decides it wants to become a profession again,
by policing its own members, we will also advance. Thus far, that is not
happening. The JCHA doesn't even receive the truth from Risk Managers!
How can health come to a nation unless we are encouraging women to be pro-
active.
The ACS needs to be evaluated by the IRS, for its role in re its
mission. Ask them how much they pay their city coordinators. It isn't
uncommon for them to receive under $25K/year. Try to find out when the
Komen Foundation last passed an external audit, and why their prime
sponsor quit (Lady Foot Locker). How can we approve the GE Digital
mammography unit, its costs, plus costs of training and facilities, yet
not support the Bio Scan, out of Star Wars Technology, by OmniCorder
(http://www.omnicorder.com) approved by the FDA on 12/23/99? The question
I have is do we really want to stop cancer deaths, & suffering? Why
does the FDA permit drug companies to have an annual "draft pick," so only
certain companies may call on certain medical groups (corporations) and
why are medical doctors permitted to form corporations? And, why do the
insurance companies pay for expensive drugs when there is an equally
effective, less costly drug available, but not to certain medical groups
due to the "draft pick?" The permissive triangling is dizzying!
Lastly, I hope the reader who found Our Bodies Ourselves to also be
lack will write to the editor, or see if Normal Swenson is still on the
editorial board (I began my nursing activitism mimeographing the first 200
copies and we thought they wouldn't see - that was before the current
publication date - it was 1966!).
C. J. Thompson
Project Outreach: Early Breast Care, Education, Screening & Advocacy (
a 501(c)(3)
http://web2.airmail.net/lorac1/projectoutreach.htm.
REf: Mammography May Help Detect More Than Just the Presence
of Breast Cancer
Findings May One Day Impact Treatment for Women With Small Tumors
By Elaine Zablocki
WebMD Medical News
Feb. 3, 2000 (Eugene, Ore.) -- By using mammograms, an international
team of researchers believes it has found a way to identify certain small
breast cancers that are far more dangerous than other small breast
cancers.
Independent observers praise the team for coming up with a very
interesting new theory about breast cancer, but warn that far more
research is needed.
Competing interests: No competing interests
I was excited to see this fascinating and excellent article on an
important topic; but though the authors believe they have shown that
support for breast cancer screening doesn't depend on unrealistic beliefs
about the benefits of mammography , I disagree.
As far as I can tell, they gave the respondents a choice in
completing the sentence, "All things being equal, if this 60 year old
woman got yearly mammograms for the next 10 years, she would have . . ."
between the following answers: "A higher or unchanged chance of dying of
breast cancer; or A lower chance of dying of breast cancer: By one fifth
to one tenth, By one third, By a half, or Reduced to zero." I think the
authors' question inadvertently gave away too much data about the range of
possible correct answers. To this question only the most naive woman
would answer that chances were reduced to nil; and indeed no woman
answered "Reduced to zero", while 55% answered "Reduced by a half". Since
United States promotions of screening have at times made it sound like the
risks are thereby reduced to almost nil, I suspect that had respondents
been given a choice of reduced by 10%, 20%, on to 90%, 100%, many would
have supplied a much higher guess than 50%, maybe as high as 90%, which
would indeed point to a vast overestimation of benefit. Obviously I don't
have evidence, and wish the question had been asked differently.
Screening harms, including the risks of undergoing non-beneficial
treatment, are indeed a serious matter. The United States consensus
(which carries almost moral force, sometimes arousing indignation if
questioned) that harms of screening (for prostate cancer, breast cancer,
or whatever) should be ignored and cannot be substantial, is to me
extremely peculiar (even though I'm a native Texan) and worthy of inquiry;
I would like to better understand this cultural imperative.
People really believe that screening and early treatment must be
beneficial, I think more as a matter of "logic" than evidence. I'd like
to know if the public in other countries views this differently.
Competing interests: No competing interests
I am a patient who was diagnosed with low-grade DCIS in 1997 on my 43rd birthday after obtaining a routine
screening mammogram showing a cluster of indeterminate microcalcifications. Although I consider myself
informed about women's health, I was ambushed by this news. I had never heard of DCIS until it became a
terrifying issue that put my life on hold.
If you survey the literature written for patients, it's easy to understand why someone like me could have
missed this. I know because I ransacked it, starting with the copy of Our Bodies, Our Selves[1] that I grabbed
from my bookshelf on the day I came home to an ominous message on my answering machine from the radiology
clinic. Unfortunately, the only comment about suspicious mammograms was in a sidebar that had apparently
been added in a recent revision and had no referring text.
Most literature written for patients assumes that a woman's entry into the breast cancer culture starts with the
discovery of a lump. For example, my surgeon gave me a pamphlet entitled Breast Lumps: A Guide to
Understanding Breast Problems and Breast Surgery[2]. The first ten pages covered the normal breast, benign
and malignant lumps, the simple 1-2-3 of breast self-examination, and what happens after the discovery of a lump.
Of couse, none of this applied to me. I had what was finally described in a small inset on page 11 as "an area of
abnormality" on a mammogram. The rest of the pamphlet was a catalog of treatment options ranging from
modified radical mastectomy to hormonal therapy and had no guidance as to how they applied to me.
My consultations with doctors were also an exercise in frustration. I was routinely told, often in the same
appointment, that I have cancer and I don't have cancer. Perhaps the subtleties of DCIS can't be
adequately conveyed in a typical fifteen-minute appointment, but I was forced to make decisions about
treatments, and to make peace with myself, from this garbled presentation.
The only reliable source of information for me was the Web. There I located gateways to the medical
literature and discovered that the message about DCIS is far more hopeful and coherent than anything I had read
in the patient literature or heard from my doctors. Given the Web's current state of chaos, this is a
time-consuming enterprise, but an overwhelmed and frightened patient is very motivated, especially one whose
professional research specialty is information retrieval on the Web.
I think there is a critical need for patient education on this subject. Your article supports the conclusion that
my experiece is, unfortunately, a common one.
References
[1] Our Bodies, Ourselves. Boston Women's Health Collective. Boston, MA: Touchstone Books, 1995.
[2] Breast Lumps: A Guide to Understanding Breast Problems and Breast Surgery. Copyright 1978, 1979, 1980,
1981, 1983, 1984, 1987, 1990, 1995, 1997 by Krames Communications, 1100 Grundy Lane, San Bruno, CA
94066-3030
Competing interests: No competing interests
Ignorance about ductal carcinoma in situ
To the Editor - Surprisingly, to judge from the article by Schwarz et
al, in the BMJ of 17 June 2000, concerning false positive mammography and
ductal carcinoma in situ, American women receive no information on ductal
carcinoma in situ, neither regarding its incidence and significance, nor
the expected course of events after diagnosis. But then, as far as I can
see, neither do women in the UK.
I first heard of it when keeping a routine recall appointment, from a
consultant radiologist, who showed me a "typical area" of abnormality in
my mammogram. She explained that, in my case, the ductal carcinoma in situ
was so widespread, that mastectomy was the likely surgical action. Surgery
would be arranged at once but I must first undergo cytological
investigation. When I asked the radiologist about the outcome of taking no
immediate surgical action, she mentioned, among other adverse symptoms,
the possibility of bleeding from the nipple. Naturally, the shock of
finding myself so suddenly afflicted led me to acquiesce.
Subsequently, without my ever meeting the responsible consultant surgeon,
I was informed that the needle biopsy revealed Grade 4 ductal carcinoma in
situ and that surgical biopsy would remove the abnormal area in its
entirety and would lead to a more accurate diagnosis. The surgical
procedure was carried out and produced a diagnosis of benign fibrocystic
papilloma.
The physical distortion caused by this technique led me to seek
reconstructive plastic surgery. Two operations did, to some extent,
improve my appearance, for which I was and still am, grateful.
My experience raises questions on the following points:
1. The sensitivity of mammography, in distinguishing between ductal
carcinoma in situ and other conditions.
2. The wisdom of precipitately and dramatically diagnosing from an X-
ray, before looking at the cells, the last stages of an uncommon disease,
the progress of which can not be predicted.
3. The use of an injurious surgical biopsy technique, which may
produce a negative result.
4. The failure to inform women, prior to mammography, that there are
other kinds of cancer to take into account.
Schwarz and colleagues indicate that only 6% of women in their survey
had heard of ductal carcinoma in situ and 60% wanted to take ductal
carcinoma in situ into account, when deciding about mammography.
I, too, was ignorant of ductal carcinoma in situ and I suspect this would
be the case in the UK among women in general. I would argue that
information before mammography should state unambiguously, that evidence
of ductal carcinoma in situ is also sought and that the likelihood of this
condition being, or becoming, malignant, should be discussed. Perhaps
radiologists, however well-meaning, in the light of the uncertainties
surrounding this diagnosis, should resist the temptation to diagnose and
to arrange surgery, before the biopsy has been examined and discussed.
Eileen Barrett, MSc DIC
273 Kings Road, Kingston-upon -Thames
KT2 5JJ
Competing interests: No competing interests