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I first saw the article Thursday night on Facebook, then stayed up until midnight reading it. In a helluva story, Peggy Orenstein addresses The Feel-Good War on Breast Cancer in this Sunday’s New York Times Magazine.

Orenstein is uniquely situated to write an article she hopes will “help change the national conversation.” She’s been treated for breast cancer twice in the last 15 years, including a mastectomy last fall, and the Times Magazine — for which she writes regularly — is one of the most powerful publications in the world.

Orenstein was first diagnosed with breast cancer in 1997 after her doctor sent her for a screening mammography. “I used to believe a mammogram saved my life,” she writes as the opening line of her piece. Today, she’s not so sure.

As she writes in the Times:

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.

She goes on to clearly and comprehensively detail the benefits and the harms of mammography, that breast cancer is not one disease, but many.

After she’s thoroughly explained the state of breast cancer screening and treatment, Orenstein travels to Dallas to talk to the Susan G. Komen Foundation about what she calls “pink ribbon culture.” She pulls no punches:

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.

In what’s sure to be a long media blitz, Orenstein was a guest on KQED’s Forum Friday morning.

“Pink ribbon in general has been specifically promoting awareness, and that generally means mammography,”  Orenstein said. She argued powerfully in her article that death rates for metastatic breast cancer have barely budged. Mammography isn’t going to do much for you if you have metastatic breast cancer, she told the Forum audience.

I caught up with Orenstein after Forum wrapped up. She talked about a survey from BreastCancer.org of 2,500 girls 8-18. Nearly 30 percent of those surveyed believe they might have breast cancer right now, despite the fact that breast cancer in girls is exceedingly rare.

BreastCancer.org argues we need to “replace fear with facts.” Orenstein’s article takes us a huge step forward. She told me it was the hardest article she’s written in her career, but it could end up being the most important.

Listen to Orenstein on Forum:

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As women are well aware, the purpose of a mammogram is to screen for cancer. What many women don’t know is that as part of the screening, radiologists also assess the level of density in a woman’s breast tissue.

Starting Monday, a new California law will require that doctors notify women if their breast tissue is dense. Dense breast tissue makes it harder to read mammograms and is associated with an increased risk of breast cancer.

Former state Sen. Joe Simitian (D-Palo Alto) introduced the law last year. It grew out of his concern that while doctors were aware of a patient’s breast density, the patient herself was not, preventing women from talking with their doctors about how they might want to address their potential increased risk. He wanted to change that.

“The fundamental premise of the legislation,” he said in a recent call with reporters, “is that absent this information, these conversations weren’t going to take place.”

Some background: breast tissue is graded from 1 (not dense) to 4 (extremely dense). The law requires that women graded either a 3 or a 4 be notified.

Here’s the specific notification required by the law:

Your mammogram shows that your breast tissue is dense. Dense breast tissue is common and is not abnormal. However, dense breast tissue can make it harder to evaluate the results of your mammogram and may also be associated with an increased risk of breast cancer.

This information about the results of your mammogram is given to you to raise your awareness and to inform your conversations with your doctor. Together, you can decide which screening options are right for you. A report of your results was sent to your physician.

But here’s where the law and medical data collide: while there’s fairly solid scientific evidence about the increased breast cancer risk for women with a “4″ rating, there’s not for women with a “3″ rating. Yet, women with a “3″ rating will be notified.

To put the increased risk in perspective, a woman in her 40s with “extremely dense breasts” has roughly the same risk of breast cancer as an average-risk woman in her 50s, according to a study of nearly 1 million women published earlier this month by researchers from UCSF. About 12 to 15 percent of women in their 40s have “extremely dense breasts.”

So, what’s a woman who receives the notification to do? The law simply suggests women decide on a course of action with their doctors.

The UCSF study looked specifically at the issue of breast density and found that women in their 40s with “extremely dense breasts” should have a mammogram every year. Major guidelines conflict as to the frequency of mammograms for women in their 40s. One says annually; another says it’s a woman’s individual choice.

But this most recent study from UCSF suggests that women in their 40s with extremely dense breasts will reduce their risk of being diagnosed with advanced disease if they have a digital mammogram every year. For women in their 50s, the researchers found no increased risk of late- stage disease if a woman had a mammogram every two years — no matter how dense the breast tissue is.

So, that’s some of the most up-to-date research on mammography.

But the new law also mentions deciding “which screening options are right for you.” The press call with Simitian included a radiologist and a nurse. Both discussed ultrasound screening for breast cancer. But Karla Kerlikowske, biostatistician and lead researcher of the UCSF study, said that while she supports women having information, in this case, the law may be ahead of the science “because we don’t know that women need additional imaging tests beyond digital mammography if they fall into one of those (breast density) categories.”

In a subsequent email, Kerlikowske said that there are no studies of what’s known as “whole breast ultrasound” to determine cancer detection and whether detection makes a difference in cancer staging.

Women with higher breast density are also at higher risk of false positives and might need to go through additional imaging and unnecessary biopsies. As Otis Brawley, chief medical officer of the American Cancer Society, noted, “The thing that increases risk also makes screening more difficult to do. God is not fair here.”

Perhaps that is what’s most worth remembering: that life is not fair. At a time when people in general — not just women — want certainty in the face of a possible disease, medical science cannot yet provide it.

Again, what should you do if you get a notification of high breast density? Talk to your doctor.

Learn more:
Listen to the story.

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As everybody knows by now, how frequently a woman should have a mammogram is a topic of hot debate in the U.S. In particular, women in their 40s have been troubled by recommendations almost four years ago from the U.S. Preventive Services Task Force that mammograms are not routinely recommended for them. Instead, the decision is an “individual one” that a woman can make, presumably in conversation with her doctor.

Now, a new study has a tailored recommendation. For women in their 40s with “extremely dense breasts,” annual screening will reduce their risk of being diagnosed with advanced stage breast cancer.

“There is this sub-group that is higher risk and has more aggressive tumors,” said lead researcher Karla Kerlikowske, an epidemiologist and biostatistician at UCSF. “Annual mammography is probably better for that group.”

To date, most recommendations have relied on one risk factor: age. A woman’s risk of breast cancer increases as she gets older. But there are other risk factors, too, like breast density. About 12 to 15 percent of women in their 40s have “extremely dense breasts.” Radiologists categorize breast density on a scale of 1 to 4, and a score of 4 is “extremely dense.”

But women with dense breasts are also at higher risk of false positives and may need to go through additional imaging and unnecessary biopsies. How much? The researchers report that women with extremely dense breasts have a 65.5 percent likelihood of a false positive over a ten year period. Still, “annual screening has added benefit to detect breast cancer at an earlier stage” than screening every other year, the researchers write.

(As an aside: if you’re a woman in your 40s with doctor-diagnosed “extremely dense breasts,” then your risk of breast cancer matches that of an average-risk woman in her 50s, according to the analysis.)

In the study, published in this week’s JAMA Internal Medicine, researchers looked at nearly one million women — more than 11,000 women with breast cancer and more than 900,000 without breast cancer, all of whom had mammograms.

Researchers also looked at women who used hormone therapy after menopause. Hormone therapy has been shown to increase a woman’s risk of breast cancer. For women ages 50-74, even for women with dense breasts or hormone therapy use, annual screening made no difference.

“They could be screened every two years and have the same benefit as being screened every year and fewer harms from mammography,” Kerlikowske said.

Those harms can be common. If you’re a woman in the 50-74 group, with less dense breasts (a “2″ scored by a radiologist), and do not take hormone therapy, your risk of a false positive after ten years of annual mammography is 49.8 percent. The likelihood of a false positive falls to 30.7 percent if a woman is having a mammogram every other year.

In a separate study this week, researchers found that these false positives lead to “long-term psychosocial harm” for many women.

It’s unlikely that recommendations will be changed based on this study. The American Cancer Society offers different recommendations than the U.S. Preventive Services Task Force. The ACS continues to recommend an annual mammogram for women beginning at age 40. The group’s chief medical officer, Dr. Otis Brawley says he doesn’t “see us changing right now.”

But he also said he could foresee a time of targeted recommendations for women– not just for having mammograms more frequently, but less frequently, too.

“I think we are moving toward a period of time,” Brawley said, “where we will identify through a bunch of questions that involve family history, age, density of breast tissue … whether one is menopausal or not menopausal, and we’re going to have a group of women who will be in their 50s, and we will tell them you ought to have a mammogram every three years.”

He added there could be a group that needs mammograms annually and a very targeted group that might need to be screened even more frequently.

New law takes effect April 1st

The study comes just as a new law is scheduled to take effect in California. Starting April 1st, radiologists will be required to notify women if they have heterogeneously dense or extremely dense breast tissue (category 3 or 4). Radiologists already send women a report after their mammogram; they would add this information to that letter.

The law passed with overwhelming support in the California legislature, but Brawley says aside from extremely dense breasts, that breast density is a subjective measure. UCSF’s Kerlikowske says she thinks the “law is ahead of the science,” because there’s no data showing that other kinds of screening tests, such as ultrasound or MRI, have any benefit for these women.

(Photo: U.S. Navy)

A major new study has found that — in older women — mammograms done every two years were as effective as mammograms done annually and led to far fewer false positive results.

The study, published online Tuesday in the Journal of the National Cancer Institute, included more than 140,000 women ages 66 to 89 from across the country.

Frequency of mammograms among women in their 40s and 50s has been the subject of intense debate for more than two decades, but this older group of women has been much less studied.

“We found that there really was no difference,” Dejana Braithwaite, assistant professor of cancer epidemiology at UCSF and part of the research team, told me. ”The women who were screened every two years were not at a greater risk. They did not have a higher probability of being diagnosed with late stage breast cancer compared to those women who were screened every year.”

In addition, the women screened annually had a dramatically higher rate of false positives; they were called back for unnecessary mammograms or biopsies. In the study, nearly half of women screened annually — 48 percent — had a false positive over a 10-year period, versus about 29 percent of women screened every two years.

“The overall message is that the probability of false positive results is much greater with annual screening and yet there is no added benefit,” Braithwaite said.

The U.S. Preventive Services Task Force created a firestorm of controversy in 2009 when it said women ages 50 to 74 should be screened every two years instead of annually. At that time, the task force said that “the current evidence is insufficient to assess the additional benefits and harms of screening mammography in women 75 years or older.” Braithwaite says today’s study is one step toward advancing the evidence.

“It doesn’t mean to say that women in (their) 70s and even in their 80s should not be screened. Indeed, if they are in good health — women in their 70s — there is not reason for them not to be screened.” But if they have other health issues, breast cancer screening could end up causing unnecessary harms.

“So there’s a lot of uncertainty about the value of screening in these older age groups, and that’s why we’re trying to address is this gap of information in evidence,” Braithwaite said.

And as the population ages, it’s becoming an “increasingly important question,” she concluded.

Listen to the story:

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It’s hard to believe that a one in a hundred risk of something bad happening would generate so much heated debate, but that’s where we’re at when it comes to the question of mammograms for women in their 40s. Since breast cancer is a disease which risk increases with age, the clear cut off point for mammography has been age 50. Mammography will find cancer in women in their 40s, but will carry a much higher risk of false positives.

Specifically, a 40-year-old woman has a 1.5 percent chance of developing breast cancer at some point during her 40s. The 1-in-8 chance repeated so frequently is over a lifetime — up to age 80.

While mammography is the best tool we have in detecting breast cancer, it’s not a perfect test. Mammograms will pick up abnormalities that are not breast cancer. The problem is that doctors can’t say definitively these abnormalities are benign without further testing. Sometimes that means having an additional mammogram, sometimes women must then have a biopsy. In the meantime, many of these women are worrying.

The when-to-start mammography debate has been going on for almost twenty years. More recently, in 2009, the U.S. Preventive Services Task Force re-ignited the debate when it stopped short of making an explicit recommendation that women in their 40′s be screened and instead said that the decision was an “individual one.”

Today two studies in the Annals of Internal Medicine have some hard data to help individual women make that decision. In a review of 9.5 million mammograms from across the country, researchers say that two groups of women in their 40′s are at increased risk of developing breast cancer. These two risks are a close family relative with breast cancer — a mother, sister or daughter — and extremely dense breast tissue.

These risk factors put 40-49 year old women at the same risk of developing breast cancer as women in their 50′s — 2.5 percent over the decade– and researchers say have crossed the “tipping point” where the benefit of mammography outweighs the possible harms of false positives. ”The main takeaway,” says Dr. Karla Kerlikowske of U.C. San Francisco and a co-author of both studies, “is that we need to move in the direction of what’s been coined ‘risk-based screening’ where whether you have a mammogram or not is not just based on your age, but based on your overall risk of breast cancer.”

But talk to just about any woman and they will tell you of the 40-something they know with breast cancer. Soon enough the discussion becomes very emotional. Dr. Otis Brawley, Chief Medical Officer of the American Society, wrote an accompanying editorial in the Annals addressing maximizing benefits and minimizing harms. “Risk-based screening can refocus efforts onto the women who are most likely to benefit from screening,” he writes. “This would not be a reduction in resources used; it would be a more effective use of resources. Risk-based screening has the potential to save more lives than our current practice.”

Still, at least for the time-being, the American Cancer Society continues to recommend annual mammograms for women starting at age 40.

Dr. Susan Kutner is Chair of the Northern California Kaiser Breast Care Task Force and was not involved with the studies. She welcomes the new data. “What these articles address is there are some women ages 40-49 who would benefit from screening,” she told me. “Personalizing their screening based on their risk is really important, and that’s what we’re learning as we analyze this data.”

Learn More:
KQED’s Forum addressed the new research today. You can listen to the program here: