National Controversy Over Breast Cancer Screening

Raises Questions For Individuals

By Nancy K. Crevier

Since November 16 when the United States Preventative Services Task Force (USPSTS) published its newest recommendations regarding the frequency with which women should undergo routine screening mammography, an air of mistrust and confusion has gripped many who regard the proposal for biennial screening for women aged 50 to 74 and the abandonment of routine screening for women 40 to 49 as a stumble in health gains for women.

With mammograms generally considered by women, doctors, and cancer awareness organizations to be one of the best annual preventative measures against breast cancer, the news that the screening may be nearly as effective when administered less frequently was met with reserve.

Deviating from a 1993 study that led the National Cancer Advisory Board (NCAB) to advise against routine screening mammograms for women 40 to 49, in a March 1997 National Institute of Health press release, the National Cancer Institute did an about face and advised the NCAB to recommend that women between the ages of 40 and 49, of average risk for breast cancer, get a screening mammogram every one to two years, and that all women ages 50-plus get one every year or two years. Women in the high-risk category were recommended to seek a physician’s advice on starting screening mammograms even before age 40. It also noted that because of the limitations of mammography, “a clinical breast examination by a health care provider is an important part of regular, routine health care for women.”

While the NCAB advised routine screening, it added the caveat, “Current mammography recommendations for women 40 to 49 are, of necessity, interim in nature and subject to change as new data continue to be collected.”

So it would seem that while an all-out effort by cancer awareness organizations and women’s health providers has successfully made the yearly mammogram an unpleasant but yearly ritual for millions of women in the United States the past decade, the newest tip of the see-saw on the best method of breast cancer detection should not be unexpected.

“No test is 100 percent,” said Dr Robert Cooper, director of the breast cancer program at the Danbury Hospital Praxair Cancer Center. He pointed out that other screenings, such as that for colon cancer, have been refined from initial recommendations. “Breast cancer screening now is ‘one size fits all’ and that may not be the most effective or efficient way. But we don’t want to lose the ground that we’ve gained, either, through early detection,” said Dr Cooper. There have been tremendous improvements in the field of early detection. That is why he is not advising his patients, other physicians, family members, or friends to change their current practices right now.

The new recommendations are not dissimilar to those in other parts of the world, he said, and the positive fallout of this USPSTS announcement is that it will stimulate discussion to look at the issue of breast cancer screening. The task force recommendations need to be processed and digested, which could take several months, said Dr Cooper. “I think this could encourage a serious discussion in the medical community to look at how to critically identify individuals not needing frequent screening, and to be equally tuned to those needing more screening. This is a starting point for reevaluation,” he said.

Other parts of the November task force recommendation include assessment of digital mammography and magnetic resonance imaging as screening tools, and the benefit of breast self examination. It is the USPSTS recommendation for breast self-exam that is puzzling to Dr Cooper, as the recommendation discourages the use of the manual examination.

“It’s hard to accept that self-awareness is not beneficial. Even a quick exam gives women a sense of responsibility and awareness,” said Dr Cooper. “To my knowledge, there is no downside [to breast self examination].”

A Life-Saving Self-Examination

Mary Ann Wasila-Nilan, founder of the Get In Touch Foundation in Milford, expressed a much stronger response to the USPSTS recommendation against breast self-examination.

“I am alive because of breast self-exam,” she said. “At age 39, I felt a lump. The next day, I had a negative mammogram,” said Ms Wasila-Nilan. Because she was familiar with what was normal for her body, she aggressively pursued a diagnosis of the lump that she, but no one else, could feel. An ultrasound on the heels of the negative mammogram revealed calcifications, but when the radiologist suggested she recheck it in a year, she took it upon herself to schedule an appointment with a surgeon. A surgical biopsy showed that there was a tumor, and that it was malignant. Not only that, her entire breast was filled with cancerous tumors.

“I had no family history. I was healthy and had just run a marathon. Only six percent of women diagnosed with breast cancer have a family history, though,” said Ms Wasila-Nilan, who was recently awarded the Giving Beautiful Back Award by O Magazine and Cover Girl Magazine.

Her experience, and having young daughters, led Ms Wasila-Nilan, to found Get In Touch, a breast health care program developed for health educators of girls in fifth through twelfth grades. “It’s an introduction to their body so that young women can begin the process of care of their health at an early age. It helps them to know what is normal for the individual and to be confident enough that if they sense something wrong they can have a conversation with a doctor or trusted adult. Our breasts change constantly through our lives. We need to take control of knowing what is normal for us,” she emphasized.

And while a mammogram was not helpful in diagnosing her own breast cancer, Ms Wasila-Nilan is not eager to see this screening disappear. “I have said that women at age 35 should have a baseline mammogram to determine breast tissue density and then to determine which screening will work best for that individual. For the right woman, the mammogram is a wonderful, life-saving tool, as is ultrasound, and breast self-exam. The beautiful music they make is our health,” said Ms Wasila-Nilan.

She views the task force recommendations as patronizing, but said they should not lead to hysteria, but to conversation. “We owe it to young women today to find out what we can, and we honor the women who lost their lives. What we learned, helped me to live,” she said.

Starting A Conversation

Breast cancer survivor Nancy Cappello of Bridgewater, founder of areyoudense.org and whose advocacy was crucial in the recent Connecticut legislation requiring doctors to inform women of breast tissue density and the inadequacy of mammograms for women with dense breast tissue is thrilled that the USPSTS recommendations are “at least causing conversation and making women aware that the mammogram is not perfect.” Accessing the most effective screening tools to detect early stage cancer, when it is most treatable, is critical, she said.

Her concerns center on what criteria will be used to determine which women between the ages of 40 and 49 are at risk, should the task force findings become national guidelines. “Science tells us that over 80 percent of the women who are diagnosed have no family history of the disease. Let’s use existing science to determine who is at risk.”

The question, said Ms Cappello, is if a better early detection method than mammography is needed. “Right now, mammograms supplemented by ultrasound are finding 30 percent more cancers not found using solely the mammogram,” she said. According to a study published in the Journal of the American Medical Association in May 2008, adding ultrasound to mammography screening yielded an additional 1.1 to 7.2 cancers per 1,000 high-riskwomen. It also concluded that it would increase the number of false positives, which Ms Cappello noted is one of the challenges of ultrasound. “However, like anything else, its about training and having a skilled radiologist reading the ultrasound,” she said.

She urges women to be proactive in their own health, and relentless in the pursuit of what is right for the individual.

A Life and Death Issue

Newtown resident and survivorship coordinator for the Relay For Life Michelle Babyak believes she would be dead if the new recommendations had been in place seven years ago. She was just 35 years old when she felt a lump under her arm that led her general practitioner to recommend a baseline mammogram that showed a pattern of calcification. After waiting six months and receiving another suspicious mammogram, a skilled surgeon used the calcification pattern to place the needle directly into a cancerous three-centimeter tumor that was still not visible.

Like Ms Cappello and Ms Wasila-Nilan, she did not fit the criteria for women at risk of developing breast cancer.

“I never thought the initial discovery was an issue. Even when they were doing the biopsy, I was not worried,” said Ms Babyak. What the surgeon found, though, was that she had a stage four, fast-growing cancer. Of 27 lymph nodes, 25 were cancerous. She was given a 30 percent chance of surviving five years.

“None of the task force recommendations sit well with me,” Ms Babyak said. “Waiting until a woman is 50 years old is too late for a lot of women. I am the only one of at least ten or 12 breast cancer survivors that I know, all under age 50, that the cancer did not show on the mammogram. There will be a lot of unnecessary late-stage cancers found [if these recommendations become the guideline],” she said.

Nor did mammography detect the cancer for Debra Madden and Jill Collins of Newtown, but as survivors of Hodgkin’s lymphoma at earlier ages, both fell into the high-risk category, meaning that their doctors looked a little further than they might have for the average woman. “I count myself ‘lucky’ to be high risk,” said Ms Collins.

Both women took part this past summer, although during different weeks, in the Department of Defense Breast Cancer Research Program, reviewing breast cancer research applications and providing their insight. Ms Madden is also a research advocate for the National Breast Cancer Coalition in Washington, D.C., and both women volunteer at the Danbury Ann’s Place cancer support services.

Ms Collins was encouraged by what she saw as a panelist for the Department of Defense program. “We reviewed many studies that doctors are trying to bring to life to find new ways to detect breast cancer, on boosting the immune system, and blood tests to detect the probability of getting cancer. But we’re talking five to ten years before those things benefit the public,” she said.

A Need For Better Detection

“The general public thinks that with a ‘clean’ mammogram you’re fine, and I don’t believe that,” said Ms Collins. “I think they need to come up with a better way of detecting breast cancer. We’re still in baby steps. I’m worried that if we adhere to the new recommendations, every two years, we’re going to see women falling through the cracks. Some breast cancers grow slowly, some come on so fast. How many of the aggressive cancers will be missed?” she asked.

She believes that breast self-exam is an essential means for a woman to know her body. “I personally think you have to do what’s right for yourself. ‘Risk’ a false positive and find out that all is fine,” she said.

“The mammogram is an imperfect diagnostic tool,” said Ms Madden, “but let me clarify, the National Breast Cancer Coalition is very much in support of it. If you look at the task force recommendations, they are based on women of average risk,” she said. What concerns her is that important issues have been lost in the emotional pot that has been stirred up by the task force recommendations.

“First, that mammograms are not the best screening tool for women at high-risk. Second, that the mammogram is not as effective in women under age 50, who tend to have dense breast tissue, and third, that not all breast cancers are the same. The mammogram is very good at finding slow growing tumors,” said Ms Madden. “Every woman needs to talk with her doctor about her specific situation,” she said.

So far as the breast self examination recommendations by the task force, Ms Madden interpreted it as meaning perhaps that doctors should not be spending the time doing a task that can be done by the woman. “Know your breasts and bring to the attention of the doctor any changes,” she urged.

Because the issue is so complex and wrought with strong emotions, Ms Madden believes it is important that women step back and examine the evidence. “What’s important is that research continues to develop a better diagnostic tool than the mammogram. I’m glad that these recommendations have opened the dialogue. Maybe it will be beneficial to more research. It’s never bad to get more information,” she stressed.

ACS Recommendations

 “The American Cancer Society continues to recommend annual screening using mammography and clinical breast examination for all women beginning at age 40. Our experts make this recommendation having reviewed virtually all the same data reviewed by the USPSTF, but also additional data that the USPSTF did not consider,” said Otis W. Brawley, MD, chief medical officer for the American Cancer Society in a strongly worded statement released the day after the USPSTS recommendations were made public.

He said that a 2003 review of data by the ACS, similar to that reviewed recently by the USPSTS, found that mammography has limitations based on the age of a woman and “that the overall effectiveness of mammography increases with increasing age. But the limitations do not change the fact that breast cancer screening using mammography starting at age 40 saves lives. As someone who has long been a critic of those overstating the benefits of screening, I use these words advisedly: this is one screening test I recommend unequivocally, and would recommend to any woman 40 and over, be she a patient, a stranger, or a family member,” said Dr Brawley. “With its new recommendations, the USPSTF is essentially telling women that mammography at age 40 to 49 saves lives; just not enough of them,” he said.

In light of the fact that mammography does have certain limitations, though, said the doctor, the ACS remains committed to finding better tests to diagnose breast cancer.

Pointing out the diversity of opinion even among organizations devoted to bettering women’s health, The National Breast Cancer Coalition (NBCC) released a statement reflecting the other side of the coin on November 16. The NBCC position is that the importance of breast cancer screening has long been overemphasized. Fran Visco, president of the National Breast Cancer Coalition said, “We hope that policymakers, the public, and the health care community will take the time to carefully analyze the basis of the revised recommendations. Women have been given different messages for years, but unfortunately those messages were not based on strong evidence. Women deserve the truth even when it is complicated. They can accept it.”

The NBCC stressed, “Everyone deserves to know the facts and has the right to make informed decisions regarding their health care.”

The mammogram is not a “one size fits all” screening tool, as Dr Cooper pointed out, nor do those interviewed believe that the USPSTS recommendations are “one size fits all.” Women must be proactive in their health, informed, and confident.

“The task force was mandated to review facts and report back on the public health standpoint, to determine what is best for the general population,” said Dr Cooper. “Ultimately, all of these recommendations are based on populations of 100 million people, which is different than what should be applied to an individual. There should definitely be a discussion between the woman and her doctor,” he said.