Our Feel-Good War on Breast Cancer (Peggy Orenstein)
Es un artículo largo, pero vale totalmente la pena leerlo entero. La autora, que tuvo cancer de seno, explica por qué las campañas de detección temprana son contraproducentes.
Tenemos tan metida la idea de que detección temprana equivale a prevención que esto al comienzo suena a herejía. Sin embargo, los argumentos son claros: Cuando un cancer es de crecimiento rápido, la persona probablemente lo detectará ella misma antes de hacerse cualquier examen. La mamografía no suele detectar los tipos más letales en una fase tratable. En cambio, la mamografía identifica como cancer formaciones tumorales que podrían ser igualmente tratadas más adelante, o que incluso no tienen perspectiva de crecer y por lo tanto no revisten riesgos, o bien el examen arroja un "falso positivo"; pero las personas que obtienen estos resultados son sometidas a tratamientos agresivos que sí les afectan la salud, además de la carga psicológica que supone para la persona pensarse como "enferma de cáncer".
Incluso sin hablar de mamografías, hay estudios que muestran que las mujeres que han sido capacitadas para hacerse autoexámenes mensuales no tienen más posibilidades de detectar cáncer ni mejores tasas de supervivencia que aquellas que no han sido capacitadas. Con o sin capacitación, las mujeres identifican bastante bien cuando tienen un tumor. A cambio, el exceso de concientización sobre el tema está generando miedo y rechazo al propio cuerpo en muchas mujeres jóvenes.
Pero las fundaciones y organizaciones que trabajan sobre cancer siguen financiando campañas de concientización y examen temprano, mientras destinan presupuestos minúsculos a la investigación científica que podría encontrar mejores formas de detección, tratamiento y cura. La autora no abunda mucho sobre el tema de los intereses económicos detrás de esto (por lo que no se le puede acusar de conspiranoia), pero me parece que no hay que ser muy desconfiado para imaginarse que hay muchos a quienes les conviene esta situación.
(Nuevamente, no se fien de mi resumen, lean el artículo, a continuación copio el texto completo por si tienen problemas con la página de NY Times)
I used to believe that a mammogram saved my life. I even wrote that in
the pages of this magazine. It was 1996, and I had just turned 35 when
my doctor sent me for an initial screening — a relatively common
practice at the time — that would serve as a base line when I began
annual mammograms at 40. I had no family history of breast cancer, no
particular risk factors for the disease.
So when the radiologist found an odd, bicycle-spoke-like pattern on the
film — not even a lump — and sent me for a biopsy, I wasn’t worried.
After all, who got breast cancer at 35?
It turns out I did. Recalling the fear, confusion, anger and grief of
that time is still painful. My only solace was that the system worked
precisely as it should: the mammogram caught my tumor early, and I was
treated with a lumpectomy and six weeks of radiation; I was going to
survive.
By coincidence, just a week after my diagnosis, a panel convened by the
National Institutes of Health made headlines when it declined to
recommend universal screening for women in their 40s; evidence simply
didn’t show it significantly decreased breast-cancer deaths in that age
group. What’s more, because of their denser breast tissue, younger women
were subject to disproportionate false positives — leading to
unnecessary biopsies and worry — as well as false negatives, in which
cancer was missed entirely.
Those conclusions hit me like a sucker punch. “I am the person whose
life is officially not worth saving,” I wrote angrily. When the American
Cancer Society as well as the newer Susan G. Komen foundation rejected
the panel’s findings, saying mammography was still the best tool to
decrease breast-cancer mortality, friends across the country called to
congratulate me as if I’d scored a personal victory. I considered myself
a loud-and-proud example of the benefits of early detection.
Sixteen years later, my thinking has changed. As study after study
revealed the limits of screening — and the dangers of overtreatment — a
thought niggled at my consciousness. How much had my mammogram really
mattered? Would the outcome have been the same had I bumped into the
cancer on my own years later? It’s hard to argue with a good result.
After all, I am alive and grateful to be here. But I’ve watched friends
whose breast cancers were detected “early” die anyway. I’ve sweated out
what blessedly turned out to be false alarms with many others.
Recently, a survey of three decades of screening published in November
in The New England Journal of Medicine found that mammography’s impact
is decidedly mixed: it does reduce, by a small percentage, the number of
women who are told they have late-stage cancer, but it is far more
likely to result in overdiagnosis and unnecessary treatment, including
surgery, weeks of radiation and potentially toxic drugs. And yet,
mammography remains an unquestioned pillar of the pink-ribbon awareness
movement. Just about everywhere I go — the supermarket, the dry cleaner,
the gym, the gas pump, the movie theater, the airport, the florist, the
bank, the mall — I see posters proclaiming that “early detection is the
best protection” and “mammograms save lives.” But how many lives,
exactly, are being “saved,” under what circumstances and at what cost?
Raising the public profile of breast cancer, a disease once spoken of
only in whispers, was at one time critically important, as was
emphasizing the benefits of screening. But there are unintended
consequences to ever-greater “awareness” — and they, too, affect women’s
health.
Breast cancer in your breast doesn’t kill you; the
disease becomes deadly when it metastasizes, spreading to other organs
or the bones. Early detection is based on the theory, dating back to the
late 19th century, that the disease progresses consistently, beginning
with a single rogue cell, growing sequentially and at some invariable
point making a lethal leap. Curing it, then, was assumed to be a matter
of finding and cutting out a tumor before that metastasis happens.
The thing is, there was no evidence that the size of a tumor necessarily
predicted whether it had spread. According to Robert Aronowitz, a
professor of history and sociology of science at the University of
Pennsylvania and the author of “Unnatural History: Breast Cancer and
American Society,” physicians endorsed the idea anyway, partly out of
wishful thinking, desperate to “do something” to stop a scourge against
which they felt helpless. So in 1913, a group of them banded together,
forming an organization (which eventually became the American Cancer
Society) and alerting women, in a precursor of today’s mammography
campaigns, that surviving cancer was within their power. By the late
1930s, they had mobilized a successful “Women’s Field Army” of more than
100,000 volunteers, dressed in khaki, who went door to door raising
money for “the cause” and educating neighbors to seek immediate medical
attention for “suspicious symptoms,” like lumps or irregular bleeding.
The campaign worked — sort of. More people did subsequently go to their
doctors. More cancers were detected, more operations were performed and
more patients survived their initial treatments. But the rates of women
dying of breast cancer hardly budged. All those increased diagnoses were
not translating into “saved lives.” That should have been a sign that
some aspect of the early-detection theory was amiss. Instead, surgeons
believed they just needed to find the disease even sooner.
Mammography promised to do just that. The first trials, begun in 1963,
found that screening healthy women along with giving them clinical exams
reduced breast-cancer death rates by about 25 percent. Although the
decrease was almost entirely among women in their 50s, it seemed only
logical that, eventually, screening younger (that is, finding cancer
earlier) would yield even more impressive results. Cancer might even be
cured.
That hopeful scenario could be realized, though, if women underwent
annual mammography, and by the early 1980s, it is estimated that fewer
than 20 percent of those eligible did. Nancy Brinker founded the Komen
foundation in 1982 to boost those numbers, convinced that early
detection and awareness of breast cancer could have saved her sister,
Susan, who died of the disease at 36. Three years later, National Breast
Cancer Awareness Month was born. The khaki-clad “soldiers” of the 1930s
were soon displaced by millions of pink-garbed racers “for the cure” as
well as legions of pink consumer products: pink buckets of chicken,
pink yogurt lids, pink vacuum cleaners, pink dog leashes. Yet the
message was essentially the same: breast cancer was a fearsome fate, but
the good news was that through vigilance and early detection, surviving
was within their control.
By the turn of the new century, the pink ribbon was inescapable, and
about 70 percent of women over 40 were undergoing screening. The annual
mammogram had become a near-sacred rite, so precious that in 2009, when
another federally financed independent task force reiterated that for
most women, screening should be started at age 50 and conducted every
two years, the reaction was not relief but fury. After years of
bombardment by early-detection campaigns (consider: “If you haven’t had a
mammogram, you need more than your breasts examined”), women, surveys
showed, seemed to think screening didn’t just find breast cancer but
actually prevented it.
At the time, the debate in Congress over health care reform was at its
peak. Rather than engaging in discussion about how to maximize the
benefits of screening while minimizing its harms, Republicans seized on
the panel’s recommendations as an attempt at health care rationing. The
Obama administration was accused of indifference to the lives of
America’s mothers, daughters, sisters and wives. Secretary Kathleen
Sebelius of the Department of Health and Human Services immediately
backpedaled, issuing a statement that the administration’s policies on
screening “remain unchanged.”
PR
Newswire, via Associated Press; Tom DiPace/Associated Press; Gabrielle
Plucknette/The New York Times (apron, sunglasses, flip-flop); Simon
Fergusson/Getty Images.
Even as American women embraced mammography,
researchers’ understanding of breast cancer — including the role of
early detection — was shifting. The disease, it has become clear, does
not always behave in a uniform way. It’s not even one disease. There are
at least four genetically distinct breast cancers. They may have
different causes and definitely respond differently to treatment. Two
related subtypes, luminal A and luminal B, involve tumors that feed on
estrogen; they may respond to a five-year course of pills like tamoxifen
or aromatase inhibitors, which block cells’ access to that hormone or
reduce its levels. In addition, a third type of cancer, called
HER2-positive, produces too much of a protein called human epidermal
growth factor receptor 2; it may be treatable with a targeted
immunotherapy called Herceptin. The final type, basal-like cancer (often
called “triple negative” because its growth is not fueled by the most
common biomarkers for breast cancer — estrogen, progesterone and HER2),
is the most aggressive, accounting for up to 20 percent of breast
cancers. More prevalent among young and African-American women, it is
genetically closer to ovarian cancer. Within those classifications,
there are, doubtless, further distinctions, subtypes that may someday
yield a wider variety of drugs that can isolate specific tumor
characteristics, allowing for more effective treatment. But that is
still years away.
Those early mammography trials were conducted before variations in
cancer were recognized — before Herceptin, before hormonal therapy, even
before the widespread use of chemotherapy. Improved treatment has
offset some of the advantage of screening, though how much remains
contentious. There has been about a 25 percent drop in breast-cancer
death rates since 1990, and some researchers argue that treatment — not
mammograms — may be chiefly responsible for that decline. They point to a
study of three pairs of European countries with similar health care
services and levels of risk: In each pair, mammograms were introduced in
one country 10 to 15 years earlier than in the other. Yet the mortality
data are virtually identical. Mammography didn’t seem to affect
outcomes. In the United States, some researchers credit screening with a
death-rate reduction of 15 percent — which holds steady even when
screening is reduced to every other year. Gilbert Welch, a professor of
medicine at the Dartmouth Institute for Health Policy and Clinical
Practice and co-author of last November’s New England Journal of
Medicine study of screening-induced overtreatment, estimates that only 3
to 13 percent of women whose cancer was detected by mammograms actually
benefited from the test.
If Welch is right, the test helps between 4,000 and 18,000 women
annually. Not an insignificant number, particularly if one of them is
you, yet perhaps less than expected given the 138,000 whose cancer has
been diagnosed each year through screening. Why didn’t early detection
work for more of them? Mammograms, it turns out, are not so great at
detecting the most lethal forms of disease — like triple negative — at a
treatable phase. Aggressive tumors progress too quickly, often cropping
up between mammograms. Even catching them “early,” while they are still
small, can be too late: they have already metastasized. That may
explain why there has been no decrease in the incidence of metastatic
cancer since the introduction of screening.
At the other end of the spectrum, mammography readily finds tumors that
could be equally treatable if found later by a woman or her doctor; it
also finds those that are so slow-moving they might never metastasize.
As improbable as it sounds, studies have suggested that about a quarter
of screening-detected cancers might have gone away on their own. For an
individual woman in her 50s, then, annual mammograms may catch breast
cancer, but they reduce the risk of dying of the disease over the next
10 years by only .07 percentage points — from .53 percent to .46
percent. Reductions for women in their 40s are even smaller, from .35
percent to .3 percent.
If screening’s benefits have been overstated, its potential harms are
little discussed. According to a survey of randomized clinical trials
involving 600,000 women around the world, for every 2,000 women screened
annually over 10 years, one life is prolonged but 10 healthy women are
given diagnoses of breast cancer and unnecessarily treated, often with
therapies that themselves have life-threatening side effects.
(Tamoxifen, for instance, carries small risks of stroke, blood clots and
uterine cancer; radiation and chemotherapy weaken the heart; surgery,
of course, has its hazards.)
Many of those women are told they have something called ductal carcinoma
in situ (D.C.I.S.), or “Stage Zero” cancer, in which abnormal cells are
found in the lining of the milk-producing ducts. Before universal
screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular
carcinoma in situ account for about a quarter of new breast-cancer cases
— some 60,000 a year. In situ cancers are more prevalent among women in
their 40s. By 2020, according to the National Institutes of Health’s
estimate, more than one million American women will be living with a
D.C.I.S. diagnosis.
D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of
early detection: theirs was an easily treatable disease with a nearly
100 percent 10-year survival rate. The thing is, in most cases
(estimates vary widely between 50 and 80 percent) D.C.I.S. will stay
right where it is — “in situ” means “in place.” Unless it develops into
invasive cancer, D.C.I.S. lacks the capacity to spread beyond the
breast, so it will not become lethal. Autopsies have shown that as many
as 14 percent of women who died of something other than breast cancer
unknowingly had D.C.I.S.
There is as yet no sure way to tell which D.C.I.S. will turn into
invasive cancer, so every instance is treated as if it is potentially
life-threatening. That needs to change, according to Laura Esserman,
director of the Carol Franc Buck Breast Care Center at the University of
California, San Francisco. Esserman is campaigning to rename D.C.I.S.
by removing its big “C” in an attempt to put it in perspective and tamp
down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor.
For many D.C.I.S. lesions, there is only a 5 percent chance of invasive
cancer developing over 10 years. That’s like the average risk of a
62-year-old. We don’t do heart surgery when someone comes in with high
cholesterol. What are we doing to these people?” In Britain, where women
are screened every three years beginning at 50, the government recently
decided to revise its brochure on mammography to include a more
thorough discussion of overdiagnosis, something it previously dispatched
with in one sentence. That may or may not change anyone’s mind about
screening, but at least there is a fuller explanation of the trade-offs.
In this country, the huge jump in D.C.I.S. diagnoses potentially
transforms some 50,000 healthy people a year into “cancer survivors "
and contributes to the larger sense that breast cancer is “everywhere,”
happening to “everyone.” That, in turn, stokes women’s anxiety about
their personal vulnerability, increasing demand for screening — which,
inevitably, results in even more diagnoses of D.C.I.S. Meanwhile,
D.C.I.S. patients themselves are subject to the pain, mutilation, side
effects and psychological trauma of anyone with cancer and may never
think of themselves as fully healthy again.
Yet who among them would dare do things differently? Which of them would
have skipped that fateful mammogram? As Robert Aronowitz, the medical
historian, told me: “When you’ve oversold both the fear of cancer and
the effectiveness of our prevention and treatment, even people harmed by
the system will uphold it, saying, ‘It’s the only ritual we have, the
only thing we can do to prevent ourselves from getting cancer.’ ”
What if I had skipped my first mammogram and found my tumor a few years
later in the shower? It’s possible that by then I would have needed
chemotherapy, an experience I’m profoundly thankful to have missed.
Would waiting have affected my survival? Probably not, but I’ll never
know for sure; no woman truly can. Either way, the odds were in my
favor: my good fortune was not just that my cancer was caught early but
also that it appeared to have been treatable.
Note that word “appeared”: one of breast cancer’s nastier traits is that
even the lowest-grade caught-it-early variety can recur years — decades
— after treatment. And mine did.
Patrick
Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated
Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated
Press; U.S. Postal Service, via Associated Press.
Last summer, nine months after my most recent
mammogram, while I was getting ready for bed and chatting with my
husband, my fingers grazed something small and firm beneath the scar on
my left breast. Just like that, I passed again through the invisible
membrane that separates the healthy from the ill.
This latest tumor was as tiny and as pokey as before, unlikely to have
spread. Obviously, though, it had to go. Since a lumpectomy requires
radiation, and you can’t irradiate the same body part twice, my only
option this round was a mastectomy. I was also prescribed tamoxifen to
cut my risk of metastatic disease from 20 percent to 12. Again, that
means I should survive, but there are no guarantees; I won’t know for
sure whether I am cured until I die of something else — hopefully many
decades from now, in my sleep, holding my husband’s hand, after a nice
dinner with the grandchildren.
My first instinct this round was to have my other breast removed as well
— I never wanted to go through this again. My oncologist argued against
it. The tamoxifen would lower my risk of future disease to that of an
average woman, he said. Would an average woman cut off her breasts? I
could have preventive surgery if I wanted to, he added, but it would be a
psychological decision, not a medical one.
I weighed the options as my hospital date approached. Average risk,
after all, is not zero. Could I live with that? Part of me still wanted
to extinguish all threat. I have a 9-year-old daughter; I would do
anything — I need to do everything — to keep from dying. Yet,
if death was the issue, the greatest danger wasn’t my other breast. It
is that, despite treatment and a good prognosis, the cancer I’ve already
had has metastasized. Preventive mastectomy wouldn’t change that; nor
would it entirely eliminate the possibility of new disease, because
there’s always some tissue left behind.
What did doing “everything” mean, anyway? There are days when I skip
sunscreen. I don’t exercise as much as I should. I haven’t given up aged
Gouda despite my latest cholesterol count; I don’t get enough calcium.
And, oh, yeah, my house is six blocks from a fault line. Is living with a
certain amount of breast-cancer risk really so different? I decided to
take my doctor’s advice, to do only what had to be done.
I assumed my dilemma was unusual, specific to the anxiety of having been
too often on the wrong side of statistics. But it turned out that
thousands of women now consider double mastectomies after low-grade
cancer diagnoses. According to Todd Tuttle, chief of the division of
surgical oncology at the University of Minnesota and lead author of a
study on prophylactic mastectomy published in The Journal of Clinical
Oncology, there was a 188 percent jump between 1998 and 2005 among women
given new diagnoses of D.C.I.S. in one breast — a risk factor for
cancer — who opted to have both breasts removed just in case. Among
women with early-stage invasive disease (like mine), the rates rose
about 150 percent. Most of those women did not have a genetic
predisposition to cancer. Tuttle speculated they were basing their
decisions not on medical advice but on an exaggerated sense of their
risk of getting a new cancer in the other breast. Women, according to
another study, believed that risk to be more than 30 percent over 10
years when it was actually closer to 5 percent.
It wasn’t so long ago that women fought to keep their breasts after a
cancer diagnosis, lobbying surgeons to forgo radical mastectomies for
equally effective lumpectomies with radiation. Why had that flipped? I
pondered the question as I browsed through the “Stories of Hope” on the
American Cancer Society’s Web site. I came across an appealing woman in a
pink T-shirt, smiling as she held out a white-frosted cupcake bedecked
with a pink candle. In a first-person narrative, she said that she began
screening in her mid-30s because she had fibrocystic breast disease. At
41, she was given a diagnosis of D.C.I.S., which was treated with
lumpectomy and radiation. “I felt lucky to have caught it early,” she
said, though she added that she was emotionally devastated by the
experience. She continued screenings and went on to have multiple
operations to remove benign cysts. By the time she learned she had
breast cancer again, she was looking at a fifth operation on her
breasts. So she opted to have both of them removed, a decision she said
she believed to be both logical and proactive.
I found myself thinking of an alternative way to describe what happened.
Fibrocystic breast disease does not predict cancer, though
distinguishing between benign and malignant tumors can be difficult,
increasing the potential for unnecessary biopsies. Starting screening in
her 30s exposed this woman to years of excess medical radiation — one
of the few known causes of breast cancer. Her D.C.I.S., a condition
detected almost exclusively through mammography, quite likely never
would become life-threatening, yet it transformed her into a cancer
survivor, subjecting her to surgery and weeks of even more radiation. By
the time of her second diagnosis, she was so distraught that she
amputated both of her breasts to restore a sense of control.
Should this woman be hailed as a survivor or held up as a cautionary
tale? Was she empowered by awareness or victimized by it? The fear of
cancer is legitimate: how we manage that fear, I realized — our
responses to it, our emotions around it — can be manipulated, packaged,
marketed and sold, sometimes by the very forces that claim to support
us. That can color everything from our perceptions of screening to our
understanding of personal risk to our choices in treatment. “You could
attribute the rise in mastectomies to a better understanding of genetics
or better reconstruction techniques,” Tuttle said, “but those are
available in Europe, and you don’t see that mastectomy craze there.
There is so much ‘awareness’ about breast cancer in the U.S. I’ve called
it breast-cancer overawareness. It’s everywhere. There are pink garbage
trucks. Women are petrified.”
“Nearly 40,000 women and 400 men die every year of
breast cancer,” Lynn Erdman, vice president of community health at
Komen, told me. “Until that number dissipates, we don’t think there’s
enough pink.”
I was sitting in a conference room at the headquarters of Susan G.
Komen, near the Galleria mall in Dallas. Komen is not the country’s
largest cancer charity — that would be the American Cancer Society. It
is, however, the largest breast-cancer organization. And although
Komen’s image was tarnished last year by its attempt to defund a Planned
Parenthood screening program, its name remains virtually synonymous
with breast-cancer advocacy. With its dozens of races “for the cure” and
some 200 corporate partnerships, it may be the most successful charity
ever at branding a disease; its relentless marketing has made the pink
ribbon one of the most recognized logos of our time. The ribbon has come
to symbolize both fear of the disease and the hope it can be defeated.
It’s a badge of courage for the afflicted, an expression of solidarity
by the concerned. It promises continual progress toward a cure through
donations, races, volunteerism. It indicates community. And it offers
corporations a seemingly fail-safe way to signal good will toward women,
even if, in a practice critics call “pinkwashing,” the products they
produce are linked to the disease or other threats to public health.
Having football teams don rose-colored cleats, for instance, can
counteract bad press over how the N.F.L. handles accusations against
players of rape or domestic violence. Chevron’s donations to California
Komen affiliates may help deflect what Cal OSHA called its “willful
violations” of safety that led to a huge refinery fire last year in a
Bay Area neighborhood.
More than anything else, though, the ribbon reminds women that every
single one of us is vulnerable to breast cancer, and our best protection
is annual screening. Despite the fact that Komen trademarked the phrase
“for the cure,” only 16 percent of the $472 million raised in 2011, the
most recent year for which financial reports are available, went toward
research. At $75 million, that’s still enough to give credence to the
claim that Komen has been involved in every major breast-cancer
breakthrough for the past 29 years. Still, the sum is dwarfed by the
$231 million the foundation spent on education and screening.
Though Komen now acknowledges the debate over screening on its Web site,
the foundation has been repeatedly accused of overstating mammography’s
benefits while dismissing its risks. Steve Woloshin, a colleague of
Welch’s at Dartmouth and
co-author of the Not So Stories column in The British Medical Journal,
points to a recent Komen print ad that reads: “The five-year survival
rate for breast cancer when caught early is 98 percent. When it’s not?
It decreases to 23 percent.” Woloshin called that willfully deceptive.
The numbers are accurate, but five-year survival rates are a misleading
measure of success, skewed by screening itself. Mammography finds many
cancers that never need treating and that are, by definition,
survivable. Meanwhile, some women with lethal disease may
seem
to live longer because their cancer was found earlier, but in truth,
it’s only their awareness of themselves as ill that has been extended.
“Imagine a group of 100 women who received diagnoses of breast cancer
because they felt a breast lump at age 67, all of whom die at age 70,”
Woloshin said. “Five-year survival for this group is 0 percent. Now
imagine the same women were screened, given their diagnosis three years
earlier, at age 64, but treatment doesn’t work and they still die at age
70. Five-year survival is now 100 percent, even though no one lived a
second longer.”
When I asked Chandini Portteus, vice president of research, evaluation
and scientific programs at Komen, in January why the foundation
continued to use that statistic, she didn’t so much explain as sidestep.
“I don’t think Komen meant to mislead,” she said. “We know that
mammography certainly isn’t perfect. We also know that it’s what we have
and that it’s important in diagnosing breast cancer.” (The statistic
was subsequently removed from its Web site.)
In “Pink Ribbon Blues,” Gayle Sulik, a sociologist and founder of the
Breast Cancer Consortium, credits Komen (as well as the American Cancer
Society and National Breast Cancer Awareness Month) with raising the
profile of the disease, encouraging women to speak about their
experience and transforming “victims” into “survivors.” Komen, she said,
has also distributed more than $1 billion to research and support
programs. At the same time, the function of pink-ribbon culture — and
Komen in particular — has become less about eradication of breast cancer
than self-perpetuation: maintaining the visibility of the disease and
keeping the funds rolling in. “You have to look at the agenda for each
program involved,” Sulik said. “If the goal is eradication of breast
cancer, how close are we to that? Not very close at all. If the agenda
is awareness, what is it making us aware of? That breast cancer exists?
That it’s important? ‘Awareness’ has become narrowed until it just means
‘visibility.’ And that’s where the movement has failed. That’s where
it’s lost its momentum to move further.”
Before the pink ribbon, awareness as an end in itself was not the
default goal for health-related causes. Now you’d be hard-pressed to
find a major illness without a logo, a wearable ornament and a roster of
consumer-product tie-ins. Heart disease has its red dress, testicular
cancer its yellow bracelet. During “Movember” — a portmanteau of
“mustache” and “November” — men are urged to grow their facial hair to
“spark conversation and raise awareness” of prostate cancer (another
illness for which early detection has led to large-scale overtreatment)
and testicular cancer. “These campaigns all have a similar
superficiality in terms of the response they require from the public,”
said Samantha King, associate professor of kinesiology and health at
Queen’s University in Ontario and author of"Pink Ribbons, Inc.” “They’re
divorced from any critique of health care policy or the politics of
funding biomedical research. They reinforce a single-issue competitive
model of fund-raising. And they whitewash illness: we’re made ‘aware’ of
a disease yet totally removed from the challenging and often
devastating realities of its sufferers.”
I recalled the dozens of news releases I received during last October’s
National Breast Cancer Awareness Month, an occasion I observed in bed
while recovering from my mastectomy. There was the one from Komen urging
me to make a “curemitment” to ending breast cancer by sharing a
“message about early detection or breast self-awareness that resonates
with you”; the one about the town painting itself pink for “awareness”;
the one from a Web site called Pornhub that would donate a penny to a
breast-cancer charity for every 30 views of its “big-” or “small-breast”
videos.
Then there are the groups going after the new hot “awareness”
demographic: young women. “Barbells for Boobies” was sponsoring
weight-lifting fund-raisers to pay for mammograms for women under 40.
Keep A Breast (known for its sassy “I ♥ Boobies” bracelets) urges girls
to perform monthly self-exams as soon as they begin menstruating. Though
comparatively small, these charities raise millions of dollars a year —
Keep A Breast alone raised $3.6 million in 2011. Such campaigns are
often inspired by the same heartfelt impulse that motivated Nancy
Brinker to start Komen: the belief that early detection could have saved
a loved one, the desire to make meaning of a tragedy.
Yet there’s no reason for anyone — let alone young girls — to perform
monthly self-exams. Many breast-cancer organizations stopped pushing it
more than a decade ago, when a 12-year randomized study involving more
than 266,000 Chinese women, published in The Journal of the National
Cancer Institute, found no difference in the number of cancers
discovered, the stage of disease or mortality rates between women who
were given intensive instruction in monthly self-exams and women who
were not, though the former group was subject to more biopsies. The
upside was that women were pretty good at finding their own cancers
either way.
Beyond misinformation and squandered millions, I wondered about the
wisdom of educating girls to be aware of their breasts as precancerous
organs. If decades of pink-ribboned early-detection campaigns have
distorted the fears of middle-aged women, exaggerated their sense of
personal risk, encouraged extreme responses to even low-level diagnoses,
all without significantly changing outcomes, what will it mean to
direct that message to a school-aged crowd?
Young women do get breast cancer — I was one of them. Even so, breast
cancer among the young, especially the very young, is rare. The median
age of diagnosis in this country is 61. The median age of death is 68.
The chances of a 20-year-old woman getting breast cancer in the next 10
years is about .06 percent, roughly the same as for a man in his 70s.
And no one is telling him to “check your boobies.”
“It’s tricky,” said Susan Love, a breast surgeon and president of the
Dr. Susan Love Research Foundation. “Some young women get breast cancer,
and you don’t want them to ignore it, but educating kids earlier — that
bothers me. Here you are, especially in high school or junior high,
just getting to know to your body. To do this search-and-destroy mission
where your job is to find cancer that’s lurking even though the chance
is minuscule to none. . . . It doesn’t serve anyone. And I don’t think
it empowers girls. It scares them.”
Rather than offering blanket assurances that “mammograms save lives,”
advocacy groups might try a more realistic campaign tag line. The
researcher Gilbert Welch has suggested, “Mammography has both benefits
and harms — that’s why it’s a personal decision.” That was also the
message of the 2009 task force, which was derailed by politics:
scientific evidence indicates that getting mammograms every other year
if you are between the ages of 50 and 74 makes sense; if you fall
outside that age group and still want to be screened, you should be
fully informed of the downsides.
Gabrielle Plucknette/The New York Times; Adrian Keating/Associated Press
Women are now well aware of breast cancer. So what’s
next? Eradicating the disease (or at least substantially reducing its
incidence and devastation) may be less a matter of raising more money
than allocating it more wisely. When I asked scientists and advocates
how at least some of that awareness money could be spent differently,
their answers were broad and varied. Many brought up the meager funding
for work on prevention. In February, for instance, a Congressional panel
made up of advocates, scientists and government officials called for
increasing the share of resources spent studying environmental links to
breast cancer. They defined the term liberally to include behaviors like
alcohol consumption, exposure to chemicals, radiation and socioeconomic
disparities.
Other researchers are excited about the prospect of fighting or
preventing cancer by changing the “microenvironment” of the breast — the
tissue surrounding a tumor that can stimulate or halt its growth. Susan
Love likened it to the way living in a good or bad neighborhood might
sway a potentially delinquent child. “It may well be,” she told me,
“that by altering the ‘neighborhood,’ whether it’s the immune system or
the local tissue, we can control or kill the cancer cells.” Taking
hormone-replacement therapy during menopause, which was found to
contribute to escalating rates of breast cancer, may have been the
biological equivalent of letting meth dealers colonize a street corner.
On the other hand, a vaccine, the current focus of some scientists and
advocates, would be like putting more cops on the beat.
Nearly everyone agrees there is significant work to be done at both ends
of the diagnostic spectrum: distinguishing which D.C.I.S. lesions will
progress to invasive disease as well as figuring out the mechanisms of
metastasis. According to a Fortune magazine analysis, only an estimated
.5 percent of all National Cancer Institute grants since 1972 focus on
metastasis; out of more than $2.2 billion dollars raised over the last
six years, Komen has dedicated $79 million to such research — a lot of
money, to be sure, but a mere 3.6 percent of its total budget during
that period.
“A lot of people are under the notion that metastatic work is a waste of
time,” said Danny Welch, chairman of the department of cancer biology
at the University of Kansas Cancer Center, “because all we have to do is
prevent cancer in the first place. The problem is, we still don’t even
know what causes cancer. I’d prefer to prevent it completely too, but to
put it crassly, that’s throwing a bunch of people under the bus right
now.”
One hundred and eight American women die of breast cancer each day. Some
can live for a decade or more with metastatic disease, but the median
life span is 26 months. One afternoon I talked to Ann Silberman, author
of the blog “
Breast Cancer? But Doctor . . . I Hate Pink.”
Silberman started writing it in 2009, at age 51, after finding a lump
in her breast that turned out to be cancer — a Stage 2 tumor, which she
was told gave her a survival rate of 70 percent. At the time she was a
secretary at a school in Sacramento, happily married and the mother of
two boys, ages 12 and 22. Over the next two years, she had surgery, did
six rounds of chemo, took a trio of drugs including Herceptin and,
finally, thought she was done.
Four months later, a backache and bloated belly sent her to the doctor;
the cancer had spread to her liver. Why didn’t the treatment work? No
one knows. “At this point, you know that you’re going to die, and you
know it’s going to be in the next five years,” she told me. Her goal is
to see her youngest son graduate from high school next June.
It isn’t easy to face someone with metastatic disease, especially if
you’ve had cancer yourself. Silberman’s trajectory is my worst fear; the
night after we spoke, I was haunted by dreams of cancer’s return.
Perhaps for that reason, metastatic patients are notably absent from
pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or
races. Last October, for the first time, Komen featured a woman with
Stage 4 disease in its awareness-month ads, but the wording carefully
emphasized the positive: “Although, today, she has tumors in her bones,
her liver and her lungs, Bridget still has hope.” (Bridget died earlier
this month.)
“All that awareness terminology isn’t about us,” Silberman said. “It’s
about surviving, and we’re not going to survive. We’re going to get
sick. We’re going to lose parts of our livers. We’re going to be on
oxygen. We’re going to die. It’s not pretty, and it’s not hopeful.
People want to believe in ‘the cure,’ and they want to believe that cure
is early detection. But you know what? It’s just not true.”
Scientific progress is erratic, unpredictable. “We are all foundering
around in the dark,” said Peter B. Bach, director of the Center for
Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center.
“The one thing I can tell you is some of that foundering has borne
fruit.” There are the few therapies, he said — like tamoxifen and
Herceptin — that target specific tumor characteristics, and newer tests
that estimate the chance of recurrence in estrogen-positive cancers,
allowing lower-risk women to skip chemotherapy. “That’s not curing
cancer,” Bach said, “but it’s progress. And yes, it’s slow.”
The idea that there could be one solution to breast cancer — screening,
early detection, some universal cure — is certainly appealing. All of us
— those who fear the disease, those who live with it, our friends and
families, the corporations who swathe themselves in pink — wish it were
true. Wearing a bracelet, sporting a ribbon, running a race or buying a
pink blender expresses our hopes, and that feels good, even virtuous.
But making a difference is more complicated than that.
It has been four decades since the former first lady Betty Ford went
public with her breast-cancer diagnosis, shattering the stigma of the
disease. It has been three decades since the founding of Komen. Two
decades since the introduction of the pink ribbon. Yet all that
well-meaning awareness has ultimately made women less conscious
of the facts: obscuring the limits of screening, conflating risk with
disease, compromising our decisions about health care, celebrating
“cancer survivors” who may have never required treating. And ultimately,
it has come at the expense of those whose lives are most at risk.
This article has been revised to reflect the following correction:
Correction: April 28, 2013
An
article on Page 36 this weekend about breast cancer
awareness misidentifies the reduction in the chance that a woman in her
50s will die of breast cancer over the next 10 years if she undergoes
screening. It is .07 percentage points, not .07 percent.
