(Gage Skidmore/Flickr)

The first thing you need to know about the BRCA gene is that you have it.

Don’t panic. Everyone does. In fact, we all have two of them — the BRCA1 and 2 genes. They are normal genes that “have an important function in the cell. They are involved in repairing DNA damage,” explained Dr. Robert Nussbaum, a medical geneticist at UCSF. “When they’re functioning normally, they do a good job for us.”

For starters, we all have two copies of each of the BRCA genes. Men, too. We get one copy from each parent.  These genes are “like sentences,” Nussbaum said. ”They are made up of words.” When they’re spelled right, all is well.

But “you can have all kinds of misspellings,” Nussbaum said. “Red becomes reed. All kinds of things can happen that will alter the meaning of that sentence.”

If you’ve ever texted or sent an email or written anything on a computer, you know that there are misspellings that don’t change the meaning of what you’re trying to say. Nussbaum used the example of “gray” and “grey”. The change in spelling does not change the meaning.

With the BRCA genes, there are “thousands” of ways the gene can be misspelled, Nussbaum said. But just like gray/grey doesn’t matter, neither do many of those BRCA misspellings or what Angelina Jolie correctly called a mutation.

Then there are the ones that do matter. Sadly, they matter way too much. On Tuesday Angelina Jolie said she had a mutation that gave her an 87 percent risk of developing breast cancer, which is why she decided to undergo a preventive double mastectomy.

In general, women who have inherited the harmful mutations have about 60 percent risk of developing breast cancer over their lifetimes, according to the National Cancer Institute. They are also at much higher risk of ovarian cancer. And men who inherit the gene have a dramatically increased risk of male breast cancer as well as pancreatic and prostate cancers.

Still, only about 10 percent of all breast cancers are associated with these mutations. Or, to put it the opposite way, roughly 90 percent of all breast cancers are not related to BRCA mutations. They just happen, for reasons doctors and scientists cannot fully explain.

I just googled “Angelina Jolie” and “mastectomy” and got 736 million results. It’s probably safe to say countless women are thinking about BRCA testing right now. But before you run to a lab, Nussbaum said they start with an “accurate and complete” family history, including on the father’s side. Remember that you get one copy of all your genes, including the BRCA1 and 2 genes, from your dad.

While “thousands” of mutations cause harm and “thousands” more have no effect at all, Nussbaum then pointed to a third category, “variance of uncertain significance,” he said.  Doctors see the mutation, but cannot determine if it damages the gene’s function or not. “So there is no such thing as ‘the BRCA1 mutation.’ There are thousands. Some are deleterious. Some are not. Some we don’t know.”

(Foreign and Commonwealth Office/Flickr)

Angelina Jolie lit up social media Tuesday morning with her announcement that she recently had a preventive double mastectomy. She took this route, she says, because she carries a specific BRCA1 mutation — putting her at an 87 percent risk of developing breast cancer and a 50 percent risk of ovarian cancer. You can read everything about her history in her New York Times piece, “My Medical Choice.”

But the key here is a specific BRCA1 mutation. There are many different mutations that can occur in the BRCA gene. Jolie is very careful to walk through all her personal decisions stemming from her unusually high risk, but emphasizes that “the risk is different in the case of each woman.”

About 10 percent of all breast cancers are due to those many BRCA mutations. Dr. Otis Brawley, chief medical officer with the American Cancer Society, explains in more detail what individual women should consider, in a response to Jolie’s piece:

This does not mean every woman needs a blood test to determine their genetic risk for breast and/or ovarian cancer. What it does mean is women should know their cancer family history and discuss it with their regular provider. If appropriate, they should be referred to and have the opportunity to discuss their risk and their options with a genetic specialist.

Insurance plans created before the passage of the Affordable Care Act are not required to cover the costs of genetic counseling, testing, and any surgery to reduce the risk of breast cancer. Under the Affordable Care Act, new plans are required to cover the costs of counseling and testing for breast cancer risk. There is no such mandate for the coverage of surgery.

A prophylactic (preventive) mastectomy, removing both breasts before cancer is diagnosed, can greatly reduce the risk of breast cancer, by as much as 97%. It does not completely prevent breast cancer because even a very careful surgeon will leave behind a small amount of breast tissue, which can go on to become cancerous.

Women with BRCA mutations associated with a high risk of breast cancer, confirmed by testing, and with a strong family history of breast cancer, a previous breast cancer, and who show signs of certain pre-cancerous conditions are among those who could benefit from the surgery. A woman with a mutation of known significance must consider her quantifiable risk in making the very personal decision to have her breasts and ovaries removed or pursuing other options, such as more extensive screening for breast and ovarian cancer.

Experts recommend women proceed cautiously, and receive a second opinion before deciding to have this surgery. The American Cancer Society Board of Directors has stated that ‘only very strong clinical and/or pathologic indications warrant doing this type of preventive operation.’ Nonetheless, after careful consideration, this might be the right choice for some women.

For some women, yes. But, while mutations in the BRCA genes are fairly rare, the majority of women opting for preventive mastectomy are not at elevated risk, as NPR’s Shots blog notes:

“We found that women who have cancer in one breast overestimate their risk of cancer in the other breast by sixfold,” says Todd Tuttle, chief of surgical oncology at the University of Minnesota. “It’s very exaggerated.” …

Increased awareness of breast cancer due to the ubiquitous pink ribbon campaigns could be fueling the rise in prophylactic mastectomies, some people say. “Women have this exaggerated perceived risk of getting breast cancer,” Tuttle told Shots. “They see breast cancer everywhere.”

There has not been an increase in prophylactic mastectomy in Europe, Tuttle notes, though women there have access to the same surgery and reconstruction. “I wonder if part of the difference is this hyperawareness of breast cancer.”

Berkeley-based journalist Peggy Orenstein took on the hyperawareness of breast cancer in another New York Times venue, its Sunday magazine. Orenstein was first diagnosed with breast cancer 16 years ago. She had a lumpectomy plus radiation, then suffered a recurrence last year. Her only option was mastectomy, which she had on the affected breast. Yet she opted against preventive mastectomy on the other side. From her article:

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.

Meanwhile, at Breast Cancer Action, spokeswoman Angela Wall points out that Jolie had access to “all the information she needs.” But in the interest of stating the obvious, that is not the case for every woman.

The genetic test for BRCA mutations is held tightly by Myriad Genetics, so tightly that a case questioning whether human genes are patentable has made it the U.S. Supreme Court. Wall says that laboratories across the country could offer a comparable test for a fraction of the cost — potentially opening up the test to more women — but Myriad will not license it, making its $3,000 test a monopoly.

While Wall is supportive of Jolie’s decision (“This is an impossible decision and women do not make this choice lightly”), she says the answer to breast cancer is not prophylactic mastectomy, it’s prevention.

“It we want to get really serious about preventing breast cancer,” she practically fumed over the phone, “we need to do a lot more than celebrating a woman who has preventive mastectomy. … What about all the other risk factors? The environmental risk factors?” She advocates that what is needed are strong regulations to limit or ban known toxins that cause breast cancer.

Learn more:

Breast Cancer — Do Your Genes Put You At Risk? (Cleveland Clinic)

(Photo/Getty Images)

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:

(Photo: U.S. Navy)

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.

(Photo: U.S. Navy)

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.

View of Marin County from Mt. Tamalpais. (Flickr: Steve Mohundro)

Let’s start out with the disclaimers — first, this small study — just 338 samples — has to be proven in a larger study. Second, even if true, we are years away from seeing new treatments.

Still this new research from UCSF is intriguing to say the least. Researchers at UC San Francisco looked at cell samples from women shown through previous testing to be at higher risk of breast cancer. They found that those women were almost twice as likely to have a genetic variation involving a vitamin D receptor. The research was published online earlier this week and will be in the November print edition of the Journal of the American College of Surgeons.

Marin County has one of the highest rates of breast cancer in the world. A 2003 study found that the land in Marin was not a factor — a woman’s risk of developing cancer did not go up if she lived longer in Marin County. In conducting that study, researchers had used cell samples taken from the mouths of women — half the women had breast cancer, half did not. Those samples were kept frozen after the study was complete.

This new study used technology developed by InterGenetics in Oklahoma City. The new technology scores breast cancer risk based on genetic variations within the vitamin D receptor and other genes, according to a press release from UCSF.

As the San Francisco Chronicle reports:

“A lot of people have been doing analyses of vitamin D levels and breast cancer risk, but there haven’t been a lot of studies addressing the vitamin D receptor itself,” said Dr. Kathie Dalessandri, a surgeon scientist in Point Reyes Station and primary author of the study.

“I think this is just the tip of the iceberg,” she said, adding that the findings need to be validated in a larger study.

Yes, there’s that “larger study needed” disclaimer mentioned above. From the UCSF release:

If genetic variations in the vitamin D receptor prove to be causally linked to breast cancer, that may help pave the way for new ways to prevent or treat the disease through vitamin D supplementation—though any such approaches would have to prove safe and effective in clinical trials, which can take years to reveal impact.

Studies of vitamin D supplementation to prevent breast cancer are going on now, Dr. Dalessandri says. Women whose alcohol consumption is more than two drinks each day are at increased risk for breast cancer. That alcohol can be associated with vitamin deficiency, which includes vitamin D deficiency. In Marin County, about 25 percent of the breast cases were in women who also had alcohol consumption above two drinks per day. Dr. Dalessandri believes the the vitamin D genetic variation is “potentially interacting” with the effects of the alcohol to increase breast cancer risk.

Again, it will take more research to prove this connection.

(Seattle Municipal Archives: Flickr)

Desiree Basila was 52 when her stage zero breast cancer — also called ductal carcinoma in situ —  was diagnosed. While her cancer was found very early, she was ultimately diagnosed with the disease in both breasts. In addition, it was found in several locations. For Basila, doctors said her only realistic treatment option was double mastectomy — which Basila opposed. “If I die at 75 instead of 95 I think I can live with that,” she told me recently. “I did not really want to have a double mastectomy.”

Basila is strong evidence that individuals react differently to their treatment choices. The new healthcare buzzword is the engaged patient, generally referring to someone who is collaborating with doctors in the decision-making process and, conversely, where a patient’s individual preferences are respected.

Basila became just such an engaged patient. After a cancer diagnosis, people usually have a few weeks to investigate treatment options, options that may be life altering. While Basila had little prior experience with cancer, she had been a science teacher and put her skills to use, digging into the research. She sought a second opinion at UC San Francisco and discovered a new research trial which appealed to her. Instead of double mastectomy, she enrolled in a trial on “Active Surveillance” of her slow-growing cancer. As part of the trial, she would go in twice a year for mammograms and she also received MRI images of her breasts once a year. “If it starts showing signs of aggression we can catch it and start more treatment at that point,” she said.

In addition to the trial, Basila had support from the Decision Services group at UCSF. There, a newly-diagnosed cancer patient can elect to work with specially trained interns. These interns are often recent college graduates on their way to medical school or other health professions. They help patients find and review accurate information, determine their priorities, and create lists of questions. An intern may also accompany a patient as a note taker during medical appointments.

Such strategies have been been shown to improve patients’ understanding of their cancer as well as their sense of engagement in their care.  In a pilot program, [PDF] nine out of ten patients felt that the list of questions, concerns and expectations contributed to a more productive appointment with their doctor. Both patients and physicians reported satisfaction with these techniques.

But this decision support was available only to a fraction of the nation’s cancer patients until earlier this summer, when the Open to Options program was launched by the Cancer Support Community. This new program was inspired by UCSF’s decision-support service, and its counselors were trained by Professor Jeffrey Belkora, Director of Decision Services for the UCSF Breast Care Center.

The nonprofit Cancer Support Community (CSC) has a network of 150 locations across the country. The Open to Options program adds a toll-free phone number and other engagement tools to dramatically expand the reach of the services.

The new program targets patients who are “newly diagnosed, facing recurrence or at some other point during their survivorship when they’re faced with making decisions,” Belkora said. “After diagnosis but before treatment is a very vulnerable time for people. … They’re overloaded and overwhelmed.”

Meanwhile, it’s been five years since the self-described “risk-tolerant” Basila made her own decision. She admits her background in science made her diagnosis somewhat less confusing for her. After collaborating with decision-support interns, Basila said she felt she could “ask the right questions and give real thought to the answers. … I didn’t want my decision to be a reaction to fear.” Although she lives with an “ongoing process” of decision, she hasn’t wavered for the past five years. Her early stage breast cancer has not progressed and she is “thrilled” with her choice.

Active surveillance is common in prostate cancer but considered experimental for breast cancer. The outcome, while under study, is unknown. “Every one of us,” Basila said, “has to decide what will be our quality vs. quantity of life.”

This blog has been updated to remove estimates of how many people might be served by the new service.

Eve Harris is a Bay Area health writer. Check out her blog, A Healthy Piece of My Mind.

(Photo: U.S. Navy)

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: