Pink ribbons, walkathons, commercials. Breast cancer month is coming to an end and, as a breast cancer survivor, I know all too well that the importance of early detection cannot be stressed enough.
Fortunately, significant advancements have made this possible. Technologies such as breast MRIs allow doctors to diagnose breast cancer even earlier and to treat patients with more conservative methods. The American Cancer Society recommends that women at high risk for breast cancer (greater than 20 percent lifetime risk) get an MRI and a mammogram every year, and for good reason – early detection made possible by breast imaging has helped lead to a 30 percent reduction in breast cancer mortality over the past couple decades.
So why should women be concerned about the future of their breast health? Congress is currently considering proposals in health reform legislation that could impair access to vital advanced imaging tests, like MRIs, that so many women credit with detecting their breast cancers early and saving their lives. Although proposed cuts are specific to Medicare reimbursements, we can expect that private insurers will follow suit, presenting a widespread reduction in access to these important tests.
Limited access to imaging services could have been life changing for me. For years I received an annual mammogram and ultrasound that showed nothing significant. But I knew that my breasts had changed consistency and I feared breast cancer. A breast MRI immediately identified cancer in both breasts and my lymph glands. Shortly after my diagnosis, I underwent surgery and oncology treatment and I am now, thankfully, cancer free.
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But if we don’t act now, other women might not be so lucky. Proposed cuts to Medicare spending on medical imaging present a dire future for breast cancer detection for women who need imaging services the most. Medicare recipients, women over the age of 65, are at high risk for invasive breast cancer, which is detected by MRIs. The National Cancer Institute reports that from 2002-2006, the incidence of invasive breast cancer was 82.7 cases per 100,000 for women under 65, while the incidence of invasive breast cancer was 408.2 cases per 100,000 for women over 65.
Under the proposals, critical diagnostic services, not just MRIs, also stand to be cut significantly. The rate of mammography growth is shrinking in part because reimbursements for advanced imaging have subsidized mammographies – a vital screening which doctors actually lose money on. So, if we continue to arbitrarily reduce reimbursements for advanced imaging tests, doctors will also be forced to pull back on mammographies. This will have an adverse effect on the health of all women by deterring physicians from offering the tests rather than encouraging their use for prevention and early detection. These reductions are not warranted in light of recent findings, and they will negatively impact the care provided to Medicare beneficiaries.
Earlier this month I traveled from Bella Vista, Arkansas, to join hundreds of cancer survivors, doctors and advocates for a rally on Capitol Hill with the Access to Medical Imaging Coalition. We urged Congress not to cut spending on vital imaging services and you can speak up too. Help ensure your breast health won’t be at risk and email your Senators and Representatives! For more information, check out www.RightScanRightTime.org.
The American Cancer Society recently released new guidelines, raising the minimum age of regular mammograms for women with no known risk factors from 40 to 45. While these guidelines may make sense when you look at population statistics as a whole, on an anecdotal level, they alarmed me as a 43-year-old.
For my 35th birthday, my gynecologist gave me a prescription for a mammogram. It was a little early, according to the American Cancer Society (ACS) guidelines at the time, but she believed a baseline mammogram was important so that radiologists would have something to compare it to in the future. When I hit 40, I got a new prescription from a new gynecologist, who told me that as someone with no other risk factors, from then on, I should get one each year.
I don’t find mammograms all that unpleasant, but I do find them scary because of the inherent “what-if-the-worst-is-true” factor: It’s easy to push it to the bottom of the to-do list instead, to instead ignore the possibility altogether.
Then I heard the story of a friend whose mammogram picked up her breast cancer. Like me, she’s 43, and she’s going through treatment now. It was enough to make me schedule the appointment. “What-if” is scary, but the prospect of having breast cancer and not knowing it is even scarier.
Just days after my all-clear results came in this time around, however, ACS released new guidelines, raising the minimum age of regular mammograms for women with no known risk factors from 40 to 45. The new recommendations are based on research showing early mammograms don’t save many lives and have the potential to cause false positives, unnecessary biopsies, and even unneeded cancer treatment.
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While these guidelines may make sense when you look at population statistics as a whole, on an anecdotal level, they alarmed me. As women in our early 40s, my peers and I were being bombarded with mammogram reminders as recently as last month. Suddenly, we’ve been told not to bother. In fact, we’re not supposed to screen for breast cancer at all (self-exams fell by the wayside years ago, and the new guidelines say in-office exams by doctors are not useful either). Yet, we all have friends our own age who have or have had breast cancer, and we’ve seen enough pink ribbons to remind us just how many more peers will get it in the next decades of our lives. Is it really safe to do nothing?
ACS’ new guidelines were released last month in the Journal of the American Medical Association (JAMA). They suggest that women who have a normal risk of breast cancer—that is women with no family history, personal history, known genetic mutations, or other diseases that could make breast cancer more likely—can wait until 45 for a mammogram, should get one every year until 54, and then start getting them every other year for as long as they’re healthy and likely to live for ten more years.
The organization also changed its stance on clinical breast exams, which it had recommended annually starting at age 40. The new guidelines do not recommend these for women of any age, unless they have symptoms or breast abnormalities.
But ACS is not the only organization that puts out guidelines on breast cancer screening. The American Congress of Obstetricians and Gynecologists (ACOG) has its own guidelines, which suggest women get a mammogram every year or two between 40 and 49, and annually after that. The National Comprehensive Cancer Center says women should start at 40 and get one every year after that. And, the United States Preventive Services Taskforce (USPSTF) currently says, somewhat vaguely, that the decision to start mammography before age 50 should be an individual one. The recommendations issued by these groups all have varying levels of impact and influence on the medical community, insurance coverage, and public opinion as a whole.
But all of that could be changing based on current research. ACOG told the New York Times that it was going to hold a meeting in January to discuss recommendations and that the ACS would be invited. In response to ACS’s new recommendations, USPSTF said that it would examine the evidence on the cost and benefits of mammography. That group’s statement did add, however, “There are health benefits to mammography screening for women in their 40s.”
Such cautious wording may be a result of a 2009 controversy, which happened when the USPSTF revised its breast cancer screening guidelines and actually recommended against routine mammograms for women under 50. This made a lot of people very upset, because women in their 40s do get cancer and the USPSTF’s opinion on screening tests impacts whether certain tests will be covered under the Affordable Care Act (ACA). The group walked those recommendations back and said instead that women in their 40s should work with their providers to make their own screening decision and then should have annual mammograms from 50 to 74. The USPSTF released a draft of updated recommendations in May and didn’t change anything.
All of these groups review the best available data to come up with their recommendations. However, the data varies widely, both in terms of methodology and potential for interpretation. So it’s not surprising that different experts arrive at different conclusions.
The Science Behind ACS’ Guidelines
Ruth Etzioni, a statistician in the ACS Guidelines Development Group (GDG), which came up with the new recommendations, explained in an interview with Rewire, “Screening as an approach has limitations because you have to screen everybody to save a relative few.” This means that determining whether it’s worth getting screened relies on looking at population trends as a whole. No one, for example, is suggesting that all women in their 20s get regularly screened, because breast cancer is so uncommon at that age. So the panel looked at the risk of getting breast cancer, the possibility of saving lives with screening, and the downfalls of the screening itself.
The data show that the risk of getting breast cancer in the next five years is only 0.6 percent for women ages 40 to 44; it jumps to 0.9 percent for women ages 45 to 49, and 1.1 percent for those 50 to 54. But it’s not simply the risk of getting breast cancer that the panel was looking at; it’s the risk of dying from it, a fairly typical framework of evaluating the efficacy of mammograms. Many of the studies the panel examined review whether mammography at a certain age can lower the risk of death from the disease. The ACS review acknowledges that it can. The article states, “For women of all ages at average risk, screening was associated with a reduction in breast cancer mortality of approximately 20 percent.” But the number of women who will get breast cancer in their early 40s, and the percentage of those who will die from it, is still so small that it might not be worth screening everyone every year, the ACS panel determined.
Another thing the panel took into account was potential downsides of mammograms. No one is suggesting that the x-ray itself has risks. Rather, it’s what happens next—false positives, anxiety, unnecessary additional tests, and over-treatment—that has some researchers concerned. Essentially, the ACS panel determined that the risks of mammography outweighed the benefits until age 45.
According to a 2011 study, 61 percent of women who have mammograms starting at 40 are likely to have a false positive by the time they’re 50. Starting later can cut this number down, as can getting mammograms every other year. Still, the USPSTF, for example, calculated that if 1,000 women follow its current advice and have mammograms every other year from 50 to 74, 146 of them will go on to have an unnecessary breast biopsy and 18 of them will be diagnosed and treated for a cancer that would have never harmed them, which experts call “overdiagnosis.”
An editorial accompanying the JAMA article calls the review an important step forward and notes: “There is uncertainty about the magnitude of mammography’s benefits and harms and how to select patients and screening strategies to optimize the balance between benefits and harms. In the face of such uncertainty, thoughtful, evidence-based guidelines can play a powerful role in shaping policy and practice, supporting decision making by clinicians and patients, and identifying key research priorities.”
The Correct Outcomes
But some medical professionals question the new recommendations. John Cunningham, a breast surgeon with Summit Medical Group in New Jersey, told Rewire that he worries many of the standards and definitions used to judge whether widespread breast cancer screening is effective may not be giving us the right answers.
First, he explained: “I think mortality is the wrong end point. It’s hard to prove to the end result of mortality when there are so many things in between—like the course of treatment—that alter reduction of mortality.” In other words, it’s unfair to hold mammography solely responsible for saving lives, or not doing so, when the decisions made after a cancer is detected—such as how aggressively to treat it—may have more impact on a woman’s survival. Cunningham thinks that a screening test can be considered successful if it finds the disease it is screening for.
In addition, he thinks some of the additional tests that are run after something potentially suspicious is spotted on a mammogram are necessary. For the purposes of the research reviewed by ACS and other groups, every biopsy that comes back as benign is considered a false positive. Dr. Cunningham thinks this unfairly inflates the rates of false positives because sometimes biopsies find something else. “My feeling is that if it finds anything that is pathologically different than normal breast tissue it is not a true false positive,” he said. Even if it’s not cancer, it could require additional treatment, including surgery, or it could help indicate women who might be at a higher risk of developing cancer in the future.
As for overdiagnosis, or the treatment of cancer that would not have hurt patients, Cunningham thinks this label is used too much as well. Most women who fall into this category have something referred to as DCIS, ductal carcinoma in suti, which are tiny growths in the milk ducts. These may or may not become invasive cancer. Cunningham explained: “There are some patients with DCIS who would probably digress to invasive cancer if left long enough, but we don’t know whether that would be a year, ten years, or 20. Since we can’t quantify that, I don’t think we’re over-diagnosing. It’s appropriate. Then we have [to] decide what should be the management.”
Are These Results Really Harmful?
Cancer treatments are unpleasant at best and debilitating at worst. No one wants to be treated for a cancer that they could simply live with, but given that we don’t yet have the tools to know for sure which cancers will and will not become life-threatening, or how long that will take, some women might choose treatment as the lesser of two evils. Similarly, the panel points to anxiety as one of the harms that comes from false positive tests. Certainly, the days or weeks spent between hearing that your mammogram wasn’t perfect and ultimately finding out that you don’t have cancer are going to be anxious times, but many women might feel it was worth it to know for sure.
Etzioni said she understood that this argument, but thinks women need to have more information about breast cancer and what it takes to screen everyone. She told Rewire that when it comes to individual’s health, “Breast cancer is only one of the things that we have to monitor for, and we need to have perspective. It’s not like taking your pulse or your blood pressure—mammograms, ultrasounds, MRIs, biopsies—everyone coming in to get these, it’s a huge endeavor.” And it makes sense to focus that endeavor on those most at risk. Etzioni added, “Breast cancer is just not a huge risk in your 40s.”
It is true that in absolute numbers you have to screen a lot of people to save very few; approximately five of 10,000 women in their 40s and ten of 10,000 women in the 50s are likely to have a breast cancer death prevented by regular mammography. And though mammograms are relatively inexpensive tests to conduct, nothing is inexpensive when applied to a whole population. Many experts believe that this is just not the best use of our limited health-care resources.
Outlying Stories Are Scary, But Not Typical
This argument makes a lot of sense until it comes down to the individual level—some women do get breast cancer in their 40s and do find out about it through mammography. Take the friend I mentioned in the beginning, Rachel.
“I felt something,” she said to me last week, “in the shower and thought that does not feel normal.” Rachel, like other women my age, was taught to perform self-examination once a month by standing in the shower with one arm over your head and making gentle circles all around each breast. This practice is not taught anymore because research suggested it led to false positives but didn’t necessarily save lives. Still, people our age often do it, and for Rachel it turned out to be important.
Her annual exam with her gynecologist was scheduled for the following week, so she waited and pointed it out to her doctor. The doctor didn’t feel it and said there was nothing to worry about. But Rachel was worried. Luckily, she said, she had already scheduled her annual mammogram because, at 43, she’d been following the old guidelines and was ready for her third exam.
Within half an hour of her mammogram, Rachel got a call recommending further tests, an ultrasound, and another mammogram. Ultimately, a needle biopsy confirmed that the lump was a malignant tumor.
Rachel has since had a lumpectomy and one round of chemotherapy. She’s starting another round of chemotherapy soon because they found some cancer cells in her lymph system. She has an amazing attitude about the whole thing and seems to spend no time wallowing in the “why me.” She was shaken, though, when she heard about the ACS’ new guidelines: “I was shocked and quite frankly really disappointed that the ACS would go on record suggesting that people would wait that long. If I’d waited two years, I would be terminal because that’s how aggressive this was.”
Of course, Rachel is an outlier. And as scary as her story is, it’s far from typical. Remember, there’s only a 0.6 percent risk of getting breast cancer in the next five years for someone her age.
What’s a 43-Year Old to Do?
None of the guidelines—whether they’re from ACS, ACOG, or USPSTF—are binding. Women are free to decide when they start getting mammograms and how often they get them. In fact, the newest guidelines from most of these groups encourage women to work with their providers and make their own decisions. And no one expects the ACA, which takes multiple groups’ guidelines into account, to stop covering mammograms for women in their early 40s.
I’m a cautious person who is prone to dwelling on mistakes. I would gladly exchange a few false positives for the peace of mind that knowing my breasts are fine from year-to-year will bring me. But not all women feel that way. My friend Catherine, who works in public health, said she’s refused mammograms thus far despite the recommendations of her gynecologist. She told me, “I’ve had a ton of radiation in my life, I have a lot of test anxiety, and I have no history of breast cancer in my family. So given the numbers, I’m going to wait until I’m 45.”
Many women will likely do what their own provider recommends, and Cunningham said it’s unlikely that health-care providers will change their advice based on the ACS guidelines. If the medical expert community, including ACOG or the USPSTF follows suit, however, that shift may trickle down.
Cunningham, for one, said he will continue to recommend mammograms beginning at age 40. He pointed out: “ACS’ own discussion says there’s no question that screening mammography reduces mortality—we just can’t quantify how much it reduces mortality but it could be as high as 20 percent. How can you say that’s not beneficial?”
In fact, he said of the JAMA article, “I read it and I think you could come up with your own conclusion. My own conclusion is you just proved to me I should be doing it more.”
One thing that everyone seems to agree on is the need for tests that are more accurate than mammograms, and new ways to determine risk factors so that those tests can be targeted at women most likely to get breast cancer. Unfortunately, these may be years away. And for now, many women, and even health-care providers, are confused.
Etzioni said, though, that this could be a good teachable moment. “People don’t understand the point that screening has limitations and they have a lot of anxiety” about cancer. This, she said, is “understandable, but this is a great opportunity to educate people.” She added, “The guidelines provide guidance and control to do what they feel will work best for them.”
UPDATE, November 4, 8:53 a.m.: Pennsylvania Gov. Corbett signed the Breast Density Notification Act into law Friday. “I am proud to sign this bill today to improve breast cancer detection and ensure our daughters, our mothers, our wives, our sisters and our friends have earlier access to lifesaving care,” he said.
The new law will go into effect in 90 days.
The bright pink breast cancer awareness campaigns advertised on buildings, television screens, and magazines every October guarantees almost all Americans are “aware” of the disease that kills some 40,000 women in the country every year. But beyond the mainstream breast cancer awareness movement, a lower-profile campaign focused on raising awareness about breast density has been building steadily.
Breast density measures the ratio of fibrous, glandular, and fatty tissue on a four-part scale called BI-RADS. A breast with more fibrous and glandular tissue and less fat is considered dense. Experts say it’s more difficult for a mammogram to spot a tumor behind glandular and fibrous tissue; it’s easier for the machine to see through fatty tissue.
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Although breast density has been indicated on the report from the radiologist to the physician since the early 1990s, it has traditionally been left up to the doctor reading the report to share the information—or not—with his or her patient, depending on how they interpreted the report’s significance when considered along with other breast cancer risk factors.
Instead of tinting fountain water or brokering branding deals, as has been the case with many breast cancer awareness efforts, breast density awareness advocates are out to change that protocol through legislation. The first such bill was passed in Connecticut in 2009. Since then, at least 19 breast density notification bills have been introduced in state legislatures around the country, and 13 have passed into law.
Pennsylvania is poised to be next. When passed, the Breast Density Screening Notification and Screening Insurance Coverage bill will require that women be directly notified of their breast density, along with a generic explanation explaining breast density. The bill recently passed both chambers of the state legislature and is headed to the desk of Gov. Tom Corbett.
Here’s the full text of the notification that will be included on mammogram reports:
This notice contains the results of your recent mammogram, including information about breast density. If your mammogram shows that your breast tissue is dense, you should know that dense breast tissue is a common finding and is not abnormal. Statistics show as many as 70% of women could have dense or highly dense breasts. Dense breast tissue can make it harder to find cancer on a mammogram and may be associated with an increased risk of cancer. This information about the result of your mammogram is given to you to raise your awareness and to inform your conversations with your physician. Together, you can decide which screening options are right for you, based on your mammogram results, individual risk factors or physical examination. A report of your results was sent to your physician.
A department of health spokesperson told Rewire Gov. Corbett is expected to sign the bill.
A companion bill has been sitting in committee since January; it would require health insurance providers to cover doctor-recommended supplemental screenings such as MRIs and ultrasounds “if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data system established by the American College of Radiology or if a woman is believed to be at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing or other indications.”
Origin of the Breast Density Awareness Movement
In 2003, Nancy Cappello received her 11th annual clean and clear mammogram.
Two months later, during a routine gynecological exam, her doctor felt something in her breast and advised a follow-up ultrasound. Cappello told Rewire that she wasn’t particularly worried about the lump because she had had years of clean mammograms, and she had no history of first-degree relatives with breast cancer in her family and every reason to believe she was healthy.
Then everything changed.
“I’m lying on by my back, and all of a sudden they have six people descending on me,” said Cappello. “They saw something suspicious. It was illuminated, clear, on the ultrasound.”
A biopsy revealed she had stage-three breast cancer that had metastasized to 13 lymph nodes.
Bewildered, she asked her doctors how her cancer could have been missed, despite following recommended protocols. “Well, Nancy, it’s very hard to find a cancer with dense breasts,” she was told.
“I said, ‘Shouldn’t I know this?’ And he said, ‘Well, we don’t tell you.’”
Cappello calls this knowledge gap “breast cancer unawareness.”
“You can read a lot of stuff about breast cancer, and I will tell you the majority of the stuff you’re reading doesn’t mention breast density, and it is the number one predictor of cancer missed by mammogram,” said Cappello. After six surgeries, a year and a half of aggressive treatment, and some research, Cappello launched an effort to mandate that mammograms include breast cancer density information in her home state of Connecticut.
Controversy Over the Bill
Cappello frames her efforts as a straight-forward issue of informed consent. But not all stakeholders in the professional breast cancer community agree with Cappello that including a breast density report on the patient’s mammogram report is a good thing.
For the most part, it’s professional medical communities that have expressed concern about the trend, which makes sense given that professional medical associations generally don’t approve of legislation that reaches into examination rooms.
Though Cappello and other breast density awareness activists say the American College of Radiology (ACR) and the American Congress of Obstetricians and Gynecologists (ACOG) are against the bill, representatives for both organizations, when speaking with Rewire, were careful to specify that they are neutral regarding direct-patient notification. They both presented their concerns as wanting to make sure “everyone was on the same page” regarding possible unintended consequences of changing the protocol.
In Pennsylvania, ACOG hired lobbyists to help shape the language of the bill.
Dr. Kurt Barnhart is chair of the Pennsylvania chapter of ACOG. He says he and his organization worked with legislators to change the original language of the notification so it wouldn’t “alarm people.”
“We still don’t particularly like the idea that legislators are telling us how to practice medicine,” said Barnhart. “But we weren’t going to get in the way of a well-intended bill, as long as we felt the ramifications of a well-intended notification could be managed properly.”
Barnhart says the group doesn’t yet know the extent of the bill’s possible unintended consequences, but the notification will of course generate follow-up calls to the office, more consultations, and more follow-up MRIs and ultrasounds.
In a conversation with Rewire, Shawn Farley, an ACR spokesperson, echoed these concerns. The ACR issued a formal statement on notification bills that put it this way:
It is well known that greater breast density results in lower sensitivity for mammography. … While the ACR supports and promotes the practice of patient education and encourages Americans to take charge of their own care, it is less clear how patients may interpret the same information if included in a patient summary. While the ACR is not opposed to including breast parenchymal information in the lay summary [given directly to the patient], we urge strong consideration of the benefits, possible harms and unintended consequences of doing so.
The ACR statement explains that because breast density is somewhat subjective, multiple conflicting reports may manufacture a lack of trust in mammography for general patients. They are concerned that notification will instill a false sense of security in women with fatty breasts. They also state that the “significance of breast density as a risk factor for breast cancer is highly controversial,” and “there is no consensus that density per se confers sufficient risk to warrant supplemental screening.”
While ultrasound and MRI tests are more sensitive, they also produce false positives.
“The last two major scientific studies that have been done have both shown that they result in more false positives than mammography does,” said Farley. “Since breast ultrasound and MRI do result in more false positives than mammography, you may have additional and ultimately unnecessary workups and testing being done. This could include breast biopsies.”
ACR has created a website to provide information for primary care physicians and OB-GYNs during follow-up conversations regarding breast density and breast cancer risk.
Another concern is that unnecessary screening may not always be covered by insurance, creating unnecessary anxiety and financial hardship. Cappello dismisses the anxiety argument. “All the concern of the profession does not solve the fact that dense tissue impacts the accuracy of a women’s mammogram, and shouldn’t she know it?” she said. “I would trade in my advanced stage cancer for an early cancer any day.”
Not everyone feels the same way. Kelly, 50, is a Pennsylvania resident currently being treated for breast cancer. (She chose not to be identified by her real name because some family members don’t know about her condition.) Kelly has dense breasts, and was diagnosed with stage-two cancer earlier this year. She says she falls on the side of the professional organizations.
“I don’t wish this on anyone but … I feel like for me, all [being notified of dense breasts] would have caused me was worry. My oncologist said at one point, we would love to tell you that we know why people get breast cancer, and it’s occasionally a genetic component, but she said if that were the case than everyone who had those same conditions would have cancer,” she said. “We don’t know what that other factor is or whether it’s one factor, or other factors, because not everyone with dense breasts get breast cancer.”