Peggy Orenstein is a brave woman. A breast cancer survivor, she has faced up to the fact that perhaps, if she hadn’t had a mammogram that revealed a tiny tumor when she was 35, it might have vanished on its own. She would not have known that it existed—and would not have undergone a lumpectomy plus six weeks of radiation. Nor would she have suffered the emotional consequences of being told, at age 35, that she had breast cancer.

At that age few of us are ready to come face-to-face with our own mortality. In last Sunday’s New York Times Magazine, she writes: “Recalling the fear, confusion anger and grief of that time is still painful.”

But sixteen years after her diagnosis we have learned more about breast cancer, and Orenstein is willing to look the truth in the eye: “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?”

Regret is a tough one. After making a major decision that has life-changing consequences, few of us want to consider that we might have made the wrong call. Instead, most women in Orenstein’s position say: “I’m so glad I had that mammogram. It saved my life!”

Orenstein herself confesses, “that is what I used to say. I even wrote that in the pages of this magazine.

But if she hadn’t had the mammogram, and the cancer wasn’t discovered until she felt a lump, wouldn’t it have spread? Wouldn’t she be dead?

No. As Orenstein point out, “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.”

But science has advanced since the late 19th century, and we now know that just isn’t true. Sometimes breast cancer invades other parts of the body. Sometimes it doesn’t. The problem is that mammograms can’t tell us which cancers will spread.

The Likelihood Of Over-Treatment

What many women don’t realize is how commonplace the harmless cancers are. When someone is told she has breast cancer, she is likely to imagine a large, ugly lump, buried somewhere in her breast. Yet as Dr. David H. Gorski, a surgical oncologist at the Barbara Ann Karmanos Cancer Institute who specializes in breast cancer explains: today approximately 30% to 40% of breast cancer diagnosis” are examples of “ductal carcinoma in situ (DCI)”—cancers that begin in the milk ducts and “stay in place” (in situ). If they don’t spread, they are not life-threatening. Some researchers call DCIs “Stage Zero” cancer.

A recent study found that DCIS incidence rose from 1.87 per 100,000 in the mid-1970s to 32.5 in 2004,” he adds. “That’s a more than 16-fold increase over 30 years, and it’s pretty much all due to the introduction of mammographic screening.” (Mammograms are especially good at spotting DCIs. Unfortunately, they are not as good at finding the very aggressive cancers that are most likely to kill us.) )

“When it comes to DCIS, we don’t have a good handle on what percentage of DCIS will progress to invasive cancer, but we do know that a significant percentage will not.” For that reason, some argue that we should not tell patients that DCIS are “pre-cancerous.” Labeling them “Stage Zero” would be more accurate.

Nevertheless, precisely because we don’t know, “oncologists tend to treat them all the same,” says Gorski. “In other words, over diagnosis leads to overtreatment.”

Following diagnosis of DCIS, the most common scenario is for the oncologist to recommend lumpectomy, followed by radiation and hormone suppressive therapies such as Arimidex and Tamoxifen. “The problem here is that women are not being educated about the nature of DCIS or the concept of ‘non-progressive’ breast cancers. There is still the black and white perception out there that you either have cancer, or do not have cancer,” writes Sayer Ji. http://www.greenmedinfo.com/blog/mammograms-linked-epidemic-misdiagnosed-cancers

As a result 1/3 of women diagnosed with DCI’s choose to have a mastectomy– sacrificing a breast, rather than asking for a less invasive lumpectomy. http://link.springer.com/article/10.1007/s10549-011-1430-5#page-1

Breast Cancer “Awareness” –the Problem with Pink

Fifty years ago, mammograms seemed to promise so much. Trials that began in 1963 suggested 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 women (that is, finding cancer earlier) would yield even more impressive results,” Orenstein explains. “Cancer might even be cured”

The solution seemed so clear. We just needed to persuade more women to go for annual mammograms. In 1982, Nancy Brinker, who had lost a sister to breast cancer, founded the Susan G. Komen foundation, the organization that would create the Race for the Cure to raise funds for breast cancer research. Three years later, AstraZeneca, the giant international pharmaceutical company that makes the breast cancer drugs tamoxifen and Arimidex, invented “National Breast Cancer Awareness Month.” At the 1991 Race for the Cure in New York City, “Komen Greater NYC” distributed pink ribbons to every breast cancer survivor and Race participant. (Pink was the color Komen National designated to promote awareness.)

By 1993 Avon and Estee Lauder had begun to use the pink ribbon as a marketing tool, slapping it on their products, while giving a portion of their profits to the Foundation. Companies that followed their example saw their sales rises, along with their image, and soon discovered that they could even raise their prices. Pink ribbons created warm feelings.

Soon we were awash in pink—pink lids on our yogurt, pink sneakers, pink dog leashes. We even have a “Breast Cancer Barbie” resplendent in a pink gown. Thus, Breast Cancer Awareness spread.

The message was always the same, Orenstein explains: “breast cancer was a fearsome fate, but the good news for woman was that through vigilance and early detection, surviving was within their control.”

“Control”—that was the goal. From childhood, girls are trained to be good, to do the right thing. Going for annual mammograms is what we should do—not just for ourselves, but for our loved ones. If you just found the tumor early, and your surgeon cut it out, you would be safe.

While “there has been about a 25 percent drop in breast-cancer death rates since 1990 some researchers argue that treatment,” — not mammograms — “may be chiefly responsible for that decline,” Orenstein observes. “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 a New England Journal of Medicine survey of screening published in November estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

Meanwhile, many were harmed because the diagnosis led to unnecessary surgery, hospital acquired infections, depression—and even divorce.

Over-Selling Mammograms and Magical Thinking

After years of being bombarded with the message that early detection saves lives—some women began to engage in magical thinking. At some subconscious level, they began to think that mammograms don’t just discover cancer, they prevent it.

Today, almost all of us understand that mammograms don’t ward off cancer. But what many women still don’t understand is that “early detection” won’t necessarily save you. “I’ve watched friends whose cancers were detected ‘early” die anyway” Orenstein recalls.

Is this because their doctor didn’t do the right thing?

No. It’s because the most pernicious tumors move quickly and can metastasize in between mammograms. “Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase,” she points out.. “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.”

That last sentence stopped me in my tracks. I double-checked, and discovered that, yes, the recent survey of mammography in the NEJM titled “”Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence,” reveals that when it comes to “metastatic breast cancer, the kind that has by far the worst survival rate,” mammograms “appeared to have had no benefit at all.” http://www.pbs.org/newshour/rundown/2012/12/commentary-why-yearly-mammograms-can-be-harmful.html

Marketing Fear

“And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement,” Orenstein writes. “Just about everywhere I go. . . I see posters proclaiming that “early detection is the best protection.” . . . But how many lives, exactly, are being ‘saved,’ under what circumstances and at what cost? “

Here, Orenstein is not talking about the financial cost, but the emotional cost of “cancer awareness.” Our fear of breast cancer has become so great that among women diagnosed with “stage zero” (DCIS) in one breast, the share choosing a double mastectomy rose from 6.5% in 1998 to 18.4% in 2005.

This is not the case in other developed countries. No one is as good at marketing fear as we are.

“Our fear of cancer is legitimate “ Orenstein writes,” but how we manage that fear,” she now realizes –“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.”

As a result women who once asked for lumpectomies are choosing to have their entire breast removed. Now young women are saying: “Just take them both off. I want to get it over with.” (Research shows that women who elect to have a lumpectomy are just as likely to survive as women who choose a mastectomy. But those who have a lumpectomy run the risk of having to go back for a second surgery.)

According to Dr. 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, most of women diagnosed with “Zero Stage Cancer” who chose to have a double mastectomy did not have a genetic predisposition to cancer. They were not at a high risk of dying of cancer. Why, then did they make such a drastic decision?

“Tuttle speculates 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,” Orenstein explains. “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” that they will have ) to go back for a second, more aggressive operation.

Tuttle suggests that breast cancer awareness has become “over-awareness.”

“You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle says, “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.”

Part two of this post will begin with a list: “Ten Things Every Woman Should Know about Breast Cancer,” including that fact that, whether or not you go for annual mammograms, your chances of dying of breast cancer are very, very slim.

I part two, I also will discuss:

— the importance of “shared decision-making”– which insures that patients are fully aware of the risks as well as the benefits of any test or treatment;

–whether “watchful waiting” might be an appropriate strategy when a medium–risk asymptomatic woman is diagnosed with breast cancer;

–how much the Komen Foundation is spending on “awareness” vs. research;

— why the awareness rallies always feature “survivors” (many of whom are blissfully unaware that they never had invasive breast cancer in the first place), and rarely focus on the women facing the last stage of breast cancer—often with great grace and courage.

When it comes to health care stories, the media prefers “Feel Good News.” No one wants to read about the cures that didn’t work. Few really want to know that mammograms can hurt women. These stories don’t draw eyeballs.

Thus, women diagnosed with breast cancer too often find themselves on a conveyer belt headed for the OR. .

The Preventive Services Task Force’s (PSTF’s) recommendations on mammograms were met with rage. This is what happens when health care policy is driven, not by Science, but by public opinion polls, the media and self-perpetuating PR machines.

We need experts—doctors and medical researchers—shaping health policy. But polls show that many Americans are wary of “experts.”

Finally, in part 2, I will talk about what happened the last time Peggy Orenstein went for a mammogram.