Via Susan Love’s Army of Women project, we learned about a breast cancer research study headed by Boston University researchers that is currently recruiting lesbian and bisexual women. The goal of the study is to learn more about quality of life and well-being issues for lesbian and bisexual women who have been diagnosed with breast cancer, and to use that information to inform services and reduce health disparities.

From the email announcement:

It is widely known that a breast cancer diagnosis can have far reaching effects both socially and emotionally. Less well understood are the ways in which a breast cancer diagnosis impacts the well-being and quality of life of women who have historically been underserved by the medical community. Lesbian and bisexual women are one of these underserved populations, and little research has been done to assess their health and well-being as women with breast cancer. Identifying their unique needs by asking some questions in a survey will help researchers to develop culturally appropriate programs for these women.

The researchers are interested in hearing from all lesbian and bisexual women who have had a breast cancer diagnosis. They have a particular interest in women who have metastatic disease, recurrent disease, or an additional invasive cancer diagnosis, or are currently undergoing cancer treatment. If you have ever been diagnosed with breast cancer, please read on to learn more about what’s involved and who can participate.

Women have been diagnosed with breast cancer at some point their lives and identify as lesbian, bisexual, or as a woman who partners with women are eligible to participate. Participants will complete a 45 minute phone survey about their health, medical history, demographics, and sexual orientation.

Visit this page at Army of Women to learn more or sign up online to participate.

Breast Cancer Action is hosting free one-hour webinars on Tuesday, January 24th and Wednesday, January 25th to discuss the recent Institute of Medicine report on environmental risks for breast cancer, including how advocates can help move forward the report committee’s recommendations for better understanding and managing these risks.

BCA will discuss some of their concerns about the report, as well as focus policy changes required to reduce exposures to potentially cancer-causing agents.

The report, commissioned by Komen, explores the difficulties of studying how environmental factors affect breast cancer risk, recommends future research, and makes recommendations for steps women can take to reduce their breast cancer risk. Unfortunately, many of the clear actions provided in the report for reducing risk are well-covered things like “quit smoking,” while the strongest conclusion that could be drawn on many other exposures (like cosmetic and personal care products, plastics and other pollutants) was that more research was needed.

If you’re interested, you can register for register for 2pm-3pm (PST) on the 24th or 10am-11am (PST) on the 25th.

You may have seen recent news coverage along the lines of “BRCA variants not tied to worse cancer outcomes.” This story refers to a recently published study about changes in the BRCA1 and BRCA2 genes that affect breast and ovarian cancer. Women with mutated versions of the genes have greater risks of breast and ovarian cancer than women with typical versions of the genes.

In the new study in the Journal of Clinical Oncology, researchers tried to figure out whether women with BRCA1 or BRCA2 mutations who do develop cancer have worse outcomes than women without the mutations. They compared records for women with breast cancer and one of the mutations with those of women with breast cancer who did not have these gene changes.

Overall, they found that women with BRCA1 mutations had similar rates of metastatic (“distant”) cancer recurrence and death as women without it. Women with BRCA2 mutations had higher risks of recurrence and death, although the risk was similar when the women got adjuvant therapy (additional treatment to help prevent recurrences). Other factors like age and stage of the cancer also made a difference.

However, this study should be interpreted with caution. Bigger studies are probably still needed to properly understand any effects of these genes on women’s cancer therapy outcomes. The similarity of outcomes between women with and without the mutations may have to do, in part, with what we have learned about therapies for women with those mutated genes – which therapies don’t work as well for them, and which therapies might be added on for better outcomes. The researchers for the current study do say that women with mutated BRCA1/2 genes were more likely to have received adjuvant therapy, and the authors were unable to look at women’s results by how much chemotherapy they received.

While women who have BRCA1/2 mutations may be advised to have earlier or more frequent cancer screenings than other women, it’s not yet completely clear who should get tested for these mutations or if women should be tested once they’re diagnosed with breast or ovarian cancer.

As we learn more about how our genes affect our cancer risks and therapy outcomes, I expect we’ll see more and more news on these topics, and it may take some time to figure out how to assess risk, guide cancer therapies, and how our outcomes change based on this knowledge. Here are a few helpful resources for this growing area of study:

• Genetics Home Reference – Cancers – information from the National Library of Medicine on genes related to a number of cancers
• General Cancer Genetics Information – information from the National Cancer Institute on genetic (hereditary) risks for cancer, gene testing, a dictionary of genetics terms, and other resources
• My Cancer Genome – information intended to help inform physicians about tumor (not hereditary) genes and their effect on cancer therapy. Disclosure: I work with the team that produces this site.

Tara Parker-Pope at the New York Times’s Well blog begins a recent post with a provocative question: Has the power of the mammogram been oversold?

It’s not a question that has been completely ignored – considerable debate erupted in late 2009 when the US Preventive Services Task Force released new guidelines recommending that women without higher risk wait until age 50 to begin routine mammograms.

Our Bodies Ourselves, the National Women’s Health Network and Breast Cancer Action all have previously raised concerns about the right timing and use of mammograms, especially in women without an elevated risk of breast cancer, but working against a popular myth that more mammograms sooner are always better for women’s health is a challenging task.

Parker-Pope explains:

…many doctors say it’s also time to set the record straight about mammography screening for breast cancer. While most agree that mammograms have a place in women’s health care, many doctors say widespread “Pink Ribbon” campaigns and patient testimonials have imbued the mammogram with a kind of magic it doesn’t have. Some patients are so committed to annual screenings they even begin to believe that regular mammograms actually prevent breast cancer, said Dr. Susan Love, a prominent women’s health advocate.

Her post also explains a study just released in the Archives of Internal Medicine, “Likelihood That a Woman With Screen-Detected Breast Cancer Has Had Her ‘Life Saved’ by That Screening.”

The Dartmouth researchers conducted a series of calculations estimating a woman’s 10-year risk of developing breast cancer and her 20-year risk of death, factoring in the added value of early detection based on data from various mammography screening trials as well as the benefits of improvements in treatment. Among the 60 percent of women with breast cancer who detected the disease by screening, only about 3 percent to 13 percent of them were actually helped by the test, the analysis concluded.

Translated into real numbers, that means screening mammography helps 4,000 to 18,000 women each year. Although those numbers are not inconsequential, they represent just a small portion of the 230,000 women given a breast cancer diagnosis each year, and a fraction of the 39 million women who undergo mammograms each year in the United States.

Do check out the rest of Parker-Pope’s post for further exploration of this controversial topic; the full text of the journal article has also been made available online for free.

Somewhat relatedly, Shira Sternberg writes at Public Responsibility in Medicine and Research’s Ampersand blog (no, not that Ampersand…) about breast cancer from her perspective as the daughter of daughter of “longtime PRIM&R friend” Pat Barr, who died of breast cancer eight years ago. Shira reminds us that there is still work to be done:

In 1991, 119 women died a day of breast cancer, today it is about the same, 110 women die daily of the disease. And this year alone over 230,000 women will be diagnosed with the disease. We gathered at the White House because we know we can do better.

Pinkwashing is the selling of potentially harmful or cancer-causing products through pink ribbon promotions, many of which were active in October, which is national breast cancer awareness month.

Breast Cancer Action is running their “Raise a Stink!” campaign in response to concerns about one particular product, the “Promise Me” perfume marketed by Komen. BCA raised concerns that some ingredients in the product could be potential carcinogens, and objected to the small amount of money donated for each bottle of perfume.

Komen released a statement saying that its ingredients meet industry standards and applicable FDA guidelines, but the organization apparently plans to reformulate the perfume next year.

The FDA does not require cosmetic products to be tested and approved before they go on the market, and relies on voluntary industry disclosures of ingredients.

BCA also published a list of additional questions after reviewing Komen’s response, and is asking supporters to send a letter to Susan G. Komen for the Cure’s CEO, Chief Marketing Officer, and Vice President to request removal of the perfume from the market. BCA is also asking Komen to more carefully evaluate which products are marketed with pink ribbon promotions.

Susan Love, the well-known breast cancer researcher and women’s health advocate, was a 23-year-old medical student when the first edition of “Our Bodies, Ourselves” was published, but the book’s impact was instant and permanent.

“It completely revolutionized how I and really the whole world looked at women’s health,” she said during an exclusive web-only interview with NBC Nightly News, which earlier this week broadcast a report on the 40th anniversary of “Our Bodies, Ourselves” and the new 2011 edition. (Also see the web-only interview with OBOS co-founder Judy Norsigian.)

Women were treated as “small men who have babies,” says Love, noting there was no effort made to understand how women’s bodies or brains might be different than men’s. “Men were the model, and women were sort of this extra thing.”

“Our Bodies, Ourselves” put forth the radical notion that women are worthy of study. Love recalls seeing the map of the cervix in the first edition of and thinking, “It was amazing, it was a miraculous thing! Who knew what was in there?”

Fast forward 40 years, and Love is still considering the differences between women and men in her medical research. While most of the medical community studying breast cancer is focused on cancer cells, Love focuses on the breast itself.

“Believe it or not, all these years after ‘Our Bodies, Ourselves,’ we know all the molecular biology of breast cancer. But we still don’t know how many holes are in the nipple that milk comes out of,” said Love. “We still don’t know the anatomy of the breast. We still don’t know what the breast is doing when it’s not making milk. So we still need ‘Our Bodies, Ourselves’ in our lives.”

Visit msnbc.com for breaking news, world news, and news about the economy

This weekend, the New York Times ran a lengthy article on “The Pinking of America,” framed as a discussion of pink-themed marketing campaigns related to breast cancer awareness.

In it, they describe the numerous pink products on sale, especially in October, which is Breast Cancer Awareness month, noting that these campaigns have “become a multibillion-dollar business, a marketing, merchandising and fund-raising opportunity that is almost unrivaled in scope.” NFL teams, tires, mascara, blenders, and many more products have gotten a pink makeover to raise money for screening and treatment research.

As we’ve written here before, and as Breast Cancer Action’s Think Before You Pink campaign works to remind us, there are many criticisms of these pink campaigns, including the relatively small amounts actually being contributed through each pink purchase; pinkwashing – the selling of potentially harmful or cancer-causing products through pink ribbon promotions; the focus on mammograms and treatment rather than prevention; and the possibility that promoting aggressive early screening may lead to harm from unneeded treatments.

The Times piece, however, gives relatively brief and shallow coverage to these criticisms, each one counterbalanced by news of new Komen initiatives and remarks like, “Until we make more progress on the treatment side, on the understanding of what’s causing breast cancer, what would people like us to do, stop talking about it?”

Of course not. But there’s a tremendous gap between asking people not to talk about breast cancer and questioning whether the existing marketing machine is really channeling its efforts in the best possible way. I was heartened, however, by the comments, which raise critical questions not explored in the article. A few examples:

Komen’s willingness to help the NFL avoid the consequences of it’s players’ behavior toward women should not be excused.

I am a breast cancer “survivor” (so far) and I too dislike the pink. Emphasis on “the cure” and no emphasis at all on the cause: pollutants in the air water, food — caused by the same corporations who donate to the pink campaign….Fact is: if you don’t have health insurance, you won’t be able to afford the cure. And many insurers no longer pay for some of the most effective (and expensive) cancer treatments.

Instead of asking grown women to lick the lids of yogurt containers and mail them in like some school fundraising effort, companies that want to donate money can just do so—explaining to consumers that X% of sales for October will go to disease research.

Unless you’re close to someone who is suffering or has been suffering from breast cancer, you don’t see the emotional trauma that is brought on by chemo, hair loss and mastectomies. It’s time that Komen makes the reality of breast cancer less taboo. It shouldn’t just be about cute pink teeshirts and umbrellas.

As a final note, this quote from Komen’s CEO just grossed me out (emphasis mine): “America is built on consumerism. To say we shouldn’t use it to solve the social ills that confront us doesn’t make sense to me.” Ugh.

A new article in the journal Environmental Justice provides a compelling overview of a topic we have covered several times here – pinkwashing, or the pink-drenched efforts of corporations to be seen as doing something about breast cancer at the same time as their products or practices are possibly contributing to the disease.

In Pastel Injustice: The Corporate Use of Pinkwashing for Profit, authors Amy Lubitow and Mia Davis provide an introduction to the concept of pinkwashing, talk about environmental factors in breast cancer, and explain the problem of having corporations generate public goodwill from pink-themed breast cancer campaigns. They argue:

Funds raised from breast cancer walks and runs undoubtedly serve to further treatment and early detection of breast cancer (which saves more women’s lives). However, corporate entities marketing to cancer patients and their families develop brand loyalty, generate free advertising on the part of women who participate, and discourage questions about the role of chemicals used in consumer products in cancer incidence.

The authors go on to call pinkwashing a form of social injustice, and decry the focus solely on cancer treatment rather than on prevention. In critiquing the “buy something pink” model of responding to breast cancer, they outline how this approach excludes both many types of women at risk for cancer and prevention efforts that don’t focus on finding “a cure.”

Questions about disease causation, feelings of anger, frustration, or sadness do not meld with the dominant imagery of women who have conquered—or must be made to feel that they can conquer—the disease. Notably, this mainstream image is effectively a white, middle class model which excludes women of color, who are not only less likely to survive the disease than white women, but who may not connect with the hegemonic model of survivorhood that centers on fundraising walks (some of which require $1,800 as a baseline for participation), and which are heavily populated by white women.

Thus, women’s time, energy, and passion are diverted from efforts to prevent the disease and reduce its occurrence, and instead are focused on raising money (often by spending money on pre-assigned pink ribbon products, and cloaking themselves entirely in pink clothes with corporate logos). Everyone is told to keep their eyes on the prize: the elusive cure. This lost time and money, and more importantly, the physical pain and emotional hardship that families and communities endure with every breast cancer diagnosis is not accounted for or honored when we seek only ‘‘the cure.’’

This article is bound to be somewhat controversial, provoking questions of whether small amounts of certain chemicals are likely to cause any harm, whether additional safety studies or regulations are needed, and how much influence environmental exposures have compared to other risk factors. Whether campaigns to buy pink products or focus primarily on treatment are the appropriate way to focus our energies on breast cancer, though, is certainly something worth thinking about and discussing. The article is available online for free.

An upcoming webinar may be of interest to readers:

Patients Before Profits: What You Should Know About the FDA, Big Pharma, and Breast Cancer
June 21, 2011 10:00AM – 11:00 AM Pacific (1:00 pm – 2:00 PM Eastern)

Featuring Miriam Hidalgo, BCAction Volunteer Program Coordinator and Jane Zones, Medical Sociologist and Former BCAction Board Member

We will focus on how the competing interests of pharmaceutical companies and regulatory governmental bodies can fail to deliver safe and effective drugs that patients need. If you sign up, you will learn about power players at the FDA, the origins of the accelerated approval process, and more.

You will need to register online for this webinar and then will receive an email with instructions on how to join in on the 21st.

On Friday, Christine posted, FDA Moves to Revoke Approval of Popular Breast Cancer Drug, with the news of and reactions to the FDA’s recent decision that Avastin (bevacizumab) should no longer be approved for use for breast cancer because “the agency has determined that the risks of the drug outweigh the benefits for this use.”

The FDA has posted a site with additional details about the recommendation, including their decision memo explaining the agency’s rationale, press release, questions and answers, and letter to the breast cancer community.

The FDA has begun the extraordinary process to revoke approval of the use of the popular drug Avastin to treat advanced breast cancer.

Avastin had received accelerated approval in 2008, but further studies have not shown that the drug improves either overall survival rate or quality of life.

Andrew Pollack of The New York Times notes that the approval is not without some controvery — as “various breast cancer patients and some patient advocacy groups have urged the F.D.A. to keep the drug approved and not deny patients a chance at what they say could be a life-saving therapy.”

Pollack also notes the financial stake the drugmaker Roche has in the drug: “Avastin is the world’s best-selling cancer drug, with annual sales of about $6 billion. Analysts have estimated that revocation of the breast cancer approval could cost Roche $500 million a year or more in lost sales.”

Some Republicans in Congress, moreover, have tried to portray the potential revocation as “an attempt at cost control, the beginning of rationing under the new health care law,” even though the FDA’s actions are part of the system set up in the 1990s to evaluate drugs that have received accelerated approval.

Breast Cancer Action, whose opinion we trust more than Republicans’ when it comes to advocating for the best interests of women, opposed Avastin’s original approval of the drug and sent a letter to the FDA this past July recommending approval be revoked. As BCA Program Manager Kimberly Irish noted in an e-mail concerning the latest news, the FDA’s decision is a matter of medical justice:

In 2007, BCA was the only breast cancer organization to actively oppose the use of Avastin for metastatic breast cancer patients because of its failure to improve overall survival or quality of life, its side effects and its high price tag. We applaud the FDA for recommending that Roche’s request for full approval of Avastin for advanced breast cancer treatment be denied.

The interests of patients must come before the profits of companies manufacturing the treatments. We need to continue to demand better drugs for people with metastatic disease. We have a long way to go to end this epidemic but the FDA’s decision to put patient needs before drug company profits is at least a step in the right direction.

We’ve written multiple times about pink ribbon-type breast cancer awareness campaigns — with good reason.

Concerns abound over whether the explosion of pink products for purchase promotes a false sense of doing something about breast cancer; whether the dollars collected by these pink campaigns are directed effectively; the gender stereotypes perpetuated by both the color focus and many of the product campaigns; and whether some of those pinked-out products may actually be harmful to women’s health.

Noted author Barbara Ehrenreich explores the issue more thoroughly in this still incredibly relevant 2001 Harper’s piece, and discussions of “pinkwashing” can be readily found online.

NPR dove into the debate recently with two interviews: one with Barbara Brenner of Breast Cancer Action, which has raised the concerns above for some time, and the other with Katrina McGee of Susan G. Komen for the Cure, which signs off on the majority of those pink ribbon product campaigns.

Brenner argues:

“Awareness we have, the question is, what are we doing about it? And when companies can just slap a pink ribbon on any product, then we’re in trouble, because many of those products don’t do anything for breast cancer. And many of them are actually harmful to our health.”

The stand-out line: “If shopping could cure breast cancer, it would be cured by now.”

KFC’s “Buckets for the Cure” campaign, says Brenner, sends the wrong message: “You can’t sell pink bucketed chicken that’s bad for your health to raise money to help breast cancer.” BCA has more info on its website concerning the implications.

McGee, in a separate interview, seems to argue that branding unhealthy products (such as fried chicken from KFC) with pink ribbons is OK, because the organization believes “in reaching people where they live, work and play.” She continues:

“KFC helps us do that in very small communities where they may be the only fast food restaurant in town, and in many large communities where the franchisees, and those are really the people who made the contribution, sent their commitment to breast cancer to race for the cure. They did education in their restaurants and a host of other things to support the partnership.”

When asked whether there is a certain amount of pink ribbon fatigue, and whether people are somewhat jaded about these campaigns, McGee answered:

No, I really don’t. I mean, first of all, you know, nearly 40,000 women die of breast cancer each year. And until we get to the point where less women are dying, we will never have enough pink. And as long as there are still myths and misperceptions in the market, we need Breast Cancer Awareness Month. We hear all kinds of things from underwire bras cause breast cancer, to promiscuous sex causes breast cancer, to, you know, if I use a hair relaxer, it will cause breast cancer. [...] It’s the reminder, the repetitive messaging that gets women to act.

Critics of the campaign would probably ask how much of those purchase-related donations actually contributes to education about such issues.

For further guidance on evaluating pink ribbon campaigns, see Breast Cancer Action’s list of questions for consumers to ask in order to “Think Before You Pink.”

It’s October, so the explosion of pink products at the grocery and other stores shouldn’t surprise us: it’s National Breast Cancer Awareness Month, the time of the year when we’re asked to eradicate breast cancer by buying pink-ribboned  products.

Over the years, many women’s health activists have criticized the pink ribbon campaigns, protesting that these efforts do little to fund prevention, are less useful than direct donations, and promote a false sense of doing something to cure breast cancer. The New York Times Well Blog yesterday included a piece on “Pink Ribbon Fatigue,” which nicely summarizes some of the objections to the overwhelming pinkification of October and breast cancer campaigns.

Breast Cancer Action, of course, has run a “Think Before You Pink” campaign for several years, encouraging consumers to ask how much their pink purchases actually contribute and whether any of those products may actually contribute to cancer risk.

New to the conversation is a recently published book by Gayle Sulik, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health. I haven’t read it yet, but Sulik is interviewed in the Times piece linked above, where she talks about the kind of forced optimism associated with these campaigns, the associated gender roles and expectations, and potential financial conflicts “that keep the war on breast cancer profitable.” Sulik also  blogs on the issue.

If you’re a Facebook user, you may have seen recent “I like it on…” posts and wondered what they’re about. It turns out they’re an even less useful version of the earlier bra color meme, ostensibly intended to raise awareness about breast cancer through status posts. I think it’s clear enough that while social media tools may be useful for organizing and awareness-raising, mysterious status updates with faux titillation and no actual mention of breast cancer do little to promote real action on women’s health. As the blogger at Voxygen responded, “I like it without pinkwashing.”

Earlier this summer, we wrote about the President’s Cancer Panel report on environmental causes of cancer. Relatedly, the National Institutes of Health announced this week the formation of a committee to focus in part on environmental factors related specifically to breast cancer.

The committee will “develop and coordinate a strategic federal research agenda on environmental and genetic factors related to breast cancer.” It will apparently review current federal breast cancer research activities and make recommendations for improving these programs.

The committee is composed of representatives from the EPA, CDC, National Cancer Institute, the National Institute of Environmental Health Sciences, and other federal agencies, along with several physicians and scientists, and representatives from the advocacy groups Zero Breast Cancer, Breast Cancer Options, Academy for Cancer Wellness, Huntington Breast Cancer Action Coalition, National Breast Cancer Coalition, and the Breast Cancer Fund.

For more information, the National Institute of Environmental Health Sciences provides some (rather technical) resources on breast cancer and the environment, and has produced a report (most recently in 2008) on the State of the Evidence: The Connection Between Breast Cancer and the Environment [PDF]. The National Cancer Institute provides an online “understanding cancer” series which includes a set of slides and information on cancer and the environment.

When the U.S. Preventive Services Task Force (USPSTF) released new recommendations in 2009 calling for less frequent screening mammograms for women under age 50, the news caused quite a ruckus.

Many women’s health organizations, such as Our Bodies Ourselves, National Women’s Health Network and Breast Cancer Action, applauded the new guidelines — and had, in fact, been recommending the same approach for pre-menopausal women for many years. But understanding the science behind the logical, if somewhat counter-intuitive, recommendations requires a nuanced analysis.

Now, a New York Times examination of breast cancer cases explains, in very personal terms, the problems with diagnosing breast cancer — especially early detection methods, which are “prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.”

As a result, pathologists are over-diagnosing and doctors are over-treating small growths in the breasts that are often benign.

While the initial reaction might be, “Wait, isn’t it better to treat all potential signs of cancer than leave them untreated?” the NYT does a good job explaining the very real dangers that can result. Moreover, the root problem is that we still don’t have a truly accurate diagnostic tool, and diagnosis can vary depending on one person’s reading of a tiny speck.

As the Times explains, ductal carcinoma in situ, or DCIS (also called Stage 0 or non-invasive cancer) was a rare diagnosis before the 1980s, but today more than 50,000 women per year in the United States alone are told they have DCIS. Typically the abnormal cells in the breast ducts are removed via surgery — which can result in disfiguration of the breast — along with drugs and radiation. DCIS may progress to a more invasive cancer about 30 percent of the time, according to estimates in the Times article, but in some women it can take decades to do so.

Stephanie Saul’s reporting chiefly concerns pathologists, who are responsible for determining whether cells from a biopsy are malignant:

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

There is an increasing recognition of the problems, and the federal government is now financing a nationwide study of variations in breast pathology, based on concerns that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. Despite this, there are no mandated diagnostic standards or requirements that pathologists performing the work have any specialized expertise, meaning that the chances of getting an accurate diagnosis vary from hospital to hospital.

In the face of studies that have shown the high risk of misdiagnosis (in anywhere from 7.8 to 20 percent of cases, depending on the study), the College of American Pathologists is vowing to start a voluntary certification program for pathologists who read breast tissue. But as Saul notes, “Some pathologists have found the response to these types of studies slow and inadequate” — especially since studies going back as far as 2002 have revealed the problem.

The physical and psychological scarring that ensues is, in many cases, unnecessary — along with the potential long-term effects of radiation therapy.

Where you live and what kind of insurance coverage you have can also affect the accuracy of the diagnosis. Rural, community hospitals are more likely to have less experienced pathologists on staff. And insurers have not encouraged second opinions.

“Some insurance plans pay as little as $10 to pathologists who are performing second opinions on DCIS,” Saul notes in response to a comment left by “MK,” who made an excellent point: “If insurers had a requirement that any slides in which cancer was suspected were automatically sent to a board-certified pathologist, it would save patients having to search for a second opinion and save the insurers the cost of unnecessary treatment.”

It should be noted that percentages of misdiagnosis, as Saul reminds “MK,” includes both false negatives and false positives. Under-diagnosis and under-treatment is also an issue. The danger of a positive diagnosis, however, goes beyond whether it is false:

Fear compounds the confusion, and even though D.C.I.S. is 90 percent curable, there is growing concern that women and their doctors opt for more aggressive surgery, radiation and drug therapy than is needed.

A mastectomy is sometimes offered as an option for D.C.I.S., although experts say it is usually not advisable unless the D.C.I.S. is large or appears in several sites in the breast.

Yet more women who are faced with the diagnosis of D.C.I.S. become so fearful that they elect to have both breasts removed, often against their doctor’s recommendations.

“The patient gets paralyzed with a fear of cancer,” Dr. Masood said. “They want the breast off.”

Among women who had surgery for D.C.I.S., the rate of double mastectomy rose to 5 percent in 2005, from 2 percent in 1998, according to a study last year.

Dr. Ira J. Bleiweiss, chief of surgical pathology at Mount Sinai Medical Center in New York, said that ideally, all breast cancer diagnoses would be referred for a second opinion. He warns patients and their doctors: “Don’t rush to the operating room.”

In related news …

New Study Links Breast Cancer Risk, Household Products: Speaking of caution and prevention, a new study in Environmental Health found a higher breast cancer risk among women with higher use of household cleaning products.

The study by Silent Spring Institute was based on telephone interviews with 787 women diagnosed with breast cancer and 721 comparison women. Many of the products contain endocrine disrupting chemicals or mammary gland carcinogens, making them suspect as contributors.

There are, of course, limitations inherent to this type of study, including the potential for recall bias. Researchers recommend further study.

Julia Brody, executive director of the Silent Spring Institute, said, “When women are diagnosed with breast cancer, they often think about what happened in the past that might have contributed to the disease. As a result, it may be that women with breast cancer more accurately recall their past product use or even over-estimate it. Or, it could also be that experience with breast cancer influences beliefs about its causes. For example, women diagnosed with breast cancer are less likely to believe heredity contributes ‘a lot’, because most are the first in their family to get the disease.”

Plus: Interested in taking action — personally and politically? The Silent Spring Institute offers a number of action kits full of helpful information, including how to reduce risks in your home.

Recommendation to Revoke Avastin: An FDA advisory committee has recommended revoking approval of the drug Avastin, for which the FDA had given conditional approval in 2008 to treat breast cancer (part of an accelerated process for drugs that treat life-threatening diseases but have less than complete evidence of effectiveness).

If the FDA, which usually follows these recommendations, takes the very unusual step of revoking approval of a drug, Avastin will still be available, since it is approved for a variety of other cancers. This would leave it open to “off-label” use for breast cancer, but insurers would be reluctant to pay for it and it would no longer be part of a program that caps its annual cost to patients.

Breast Cancer Action program manager Kimberly Irish responds to the decision: “We agree with the committee’s recommendation, and we’re saddened that after all this time there’s still no good option to offer patients when current treatments have failed.” Read the written comments BCA sent to the committee here (PDF).