I knew I had a bladder infection. I knew it because I’d worked as a nurse practitioner for twenty years and had heard the symptoms described hundreds of times. But I wasn’t in practice now, and I couldn’t verify my own diagnosis or ask a colleague to prescribe antibiotic treatment. Nor had I found another source of primary care for myself.What to do? I remembered that a nurse practitioner I knew slightly had opened a practice within a mile of my house. Perfect. I grabbed the first appointment I could get.
In her office, I filled out a comprehensive health history, deposited a urine sample in a cup, and waited for what I hoped would be a swift and straightforward consultation. But no, my nurse practitioner wanted to talk about my health in general.
“When was your last mammogram?”she asked, scanning the form I’d filled out.
“Two years ago, I think. But I’ve decided not to do them anymore.”
“I don’t believe they save lives,” I added defensively.
Her eyes dropped from my face to my family health history, then moved back up to me.
“Ah, I understand,” she said compassionately. “Your sister died of breast cancer and you’re still dealing with that.” She went on for a while, using words like anger and fear.
“No,” I resisted. “I don’t believe early detection guarantees successful treatment or extends life.”
“I understand,” she consoled me. “You’re not ready. But you really need to start getting your mammograms again. Your sister’s cancer puts you at higher risk.”
I left the office with the prescription I needed and recovered quickly from the bladder infection, but I couldn’t put the encounter out of my mind. I thought of all the things I wished I’d been able to say to my colleague. Maybe this: You’re wrong about the anger and fear. My sister’s cancer, discovered in her early forties during the course of a routine physical exam, sent me deep into the medical literature with an insatiable hunger for information. It’s this search for answers and twenty years of experience caring for women—many of whom bore physical or emotional scars acquired in the aftermath of suspicious or inconclusive mammograms—that led me to decide that I could no longer endorse the tests as routine screening measures for me or any other woman.
[Do you still get mammograms? Join the debate or ask the author a question here.]
Slipping Confidence In Screening
At age fifty-six, as I stood in the small room at the breast center, my left breast sandwiched between two metal plates for my yearly mammogram, I didn’t realize it would be my last screening. In fact, I can’t remember just when my confidence in screening mammograms started to slip. Maybe it was after reading an early edition of Dr. Susan Love’s Breast Book, which I’d bought with the intention of passing it on to my sister the year she had her mastectomy.
I was impressed by how plainly and intelligently Love, a breast surgeon, presented the research findings about mammography. Her discussion of both the pros and cons of routine screening seemed more reasoned than what I was reading in the clinical literature and hearing at conferences. If my physician or nurse practitioner colleagues had reservations about the screening protocols we advocated, they weren’t voicing them. Mammograms were, after all, standard practice.
I began to plow through research studies online and in the medical library. I studied the wordings of my patients’ and my own mammogram results. They were almost never reported as normal, but as “benign findings” or “no evidence of malignancy at this time.” Keep coming back, they seemed to predict, and we’ll find it. I observed how the need for a repeated image, a call back, or the mere mention of words like lump, mass, referral—even watch—culled a woman from the world of the carefree well forever.
In my practice and personal life, I saw how women embraced the well-intentioned but relentless messages from medical, workplace, and women’s groups to “take the test, not the chance.” Mammograms save lives, we were reminded. You owe it to yourself and your family. Be responsible.
Campaigns were mounted against insurers that didn’t cover yearly mammograms. Free testing for poor or uninsured women became a cause to be championed. It did no good to remind women that heart disease and lung cancer take more women’s lives than breast cancer. They knew that breast cancer strikes younger and harder. And there’s no practical way to prevent it.
There were feature stories about celebrity survivors as well as “everyday” women whose breast cancer, thanks to a routine mammogram, was found early and treated fast. Breast cancer gave new meaning to the now-annual race, the color pink, the month of October (which has become Breast Cancer Awareness Month). Industries from T-shirt manufacturers to radiology departments geared up to support this new movement.
Then research reports began to filter into the media from unfamiliar, foreign-sounding organizations like the Nordic Cochrane Centre. (The Nordic Cochrane Centre describes itself as “an independent research and information centre that is part of The Cochrane Collaboration, an international network of individuals and institutions committed to preparing, maintaining, and disseminating systematic reviews of the effects of health care”; its Web site is http://www.cochrane.dk/.) The reports verified the benefit of mammography screening—for a few women, at a significant cost in unnecessary follow-up and treatment for hundreds of others. But minds that were made up didn’t open to take in this new information. The whole engine of breast cancer awareness was—and still is—simply too big, too powerful, and too well funded to gear down.
I continue to shock friends when the subject of their latest date with the mammographer comes up, and I admit that I’m no longer a member of the club. I can’t bring myself to smile at the cartoons, laugh at the jokes, forward the e-mails with the funny stories, or wear the pink ribbon. Nor do I, unless asked, elaborate on the compelling data that have informed my own decision.
I discovered early on that facts alone would sway no one. So I simply listen respectfully to other women, many of them close friends. They tell me that, thanks to early detection and surgery—often followed by grueling courses of chemo and radiation—they or their best friend, sister, or mother are here today as survivors with many healthy years ahead of them.
They do not question their logic. That is, they don’t consider whether the outcome would have been any different without early detection or extensive treatment. And if the many healthy years do not materialize, it is seldom remarked on. The sad truth is that, despite excruciatingly slow advances in treatment, there is still no way of knowing with certainty whether the surgery, chemo, or radiation “got it all.”
These days, on the rare occasions when someone really wants to know why I don’t get mammograms, I’m glad to be able to share the information from a useful little pamphlet published online in eleven languages in 2008 by that remote-sounding Nordic Cochrane Centre. It’s located, as it happens, in Denmark:
“If 2,000 women are screened regularly for ten years, one will benefit from the screening, as she will avoid dying from breast cancer. At the same time, ten healthy women will…become cancer patients and will be treated unnecessarily. These women will have either a part of their breast or the whole breast removed, and they will often receive radiotherapy, and sometimes chemotherapy. Furthermore, about 200 healthy women will experience a false alarm. The psychological strain until one knows whether or not it was cancer, and even afterward, can be severe.”
Another important fact from my friends at the Nordic Cochrane Centre: It has not been shown that women who undergo regular screening live longer than those who don’t. This information is available elsewhere in different forms, but I like the clarity and concision of the Nordic Cochrane Centre pamphlet—as well as its list of solid scientific references.
Although I’m fully persuaded, I’m not naïve. I know it will take more than this information for many of my friends to shift their thinking. The “routine” mammogram has become part of the cycle of their year. They get prodding and support from their family, social networks, and doctors who must adhere to community standards of practice. Doctors and other providers, meanwhile, have to reckon with the knowledge that preventive health screening statistics might be collected from patients’ charts by review boards, insurers, or plaintiffs’ attorneys.
Discord In The Ranks
The Washington Post headline late in 2009, “Fierce Debate Raging over New Cancer Test Guidelines,” came as no surprise to me. The US Preventive Services Task Force had recommended that women age fifty or younger, as well as those over seventy-five, talk to their doctor about how often they should be screened, rather than automatically opting for an annual mammogram. What’s more, the task force recommended a screening mammogram every two years for women ages 50–74. The task force is an independent panel of private-sector experts in prevention and primary care; it is currently composed of ten physicians, one nurse, and a Ph.D. in health management and policy. The members had relied on the available evidence, statistical models, and their own professional judgment to reach their conclusions. (If you want to find out more about the basis on which the task force made its recommendation, read “Screening for Breast Cancer: U.S. Preventive Services Task Force Recommendation Statement” in the November 17, 2009, issue of the Annals of Internal Medicine.) After the recommendations were released and a heated debate began, the disappointing news that government officials were quick to backpedal from the task force’s recommendations didn’t surprise me, either.
What? No more yearly mammograms? No routine screening for most women below fifty? The media were quick to highlight the discord among medical professionals who responded publicly to the recommendations.
Some activists suggested that the recommendations were a political move aimed at cutting costs, and that the government and private insurers would soon limit the number of mammograms they would pay for. Those breast cancer awareness advocates who believe that catching cancer early is a matter of life and death cried foul.
Breast care centers with enormous investments in mammography machines and technicians continued to promote the benefits of annual screening. The general public, including most health professionals, clung to the belief that early detection saves lives. They are heavily influenced by vociferous groups and experts with a stake in perpetuating the status quo.
If you are the one in two thousand whose life is extended, that’s all that counts.
If you are somehow harmed as a result of annual mammograms, that’s the price you pay for access to a test that is considered the “gold standard” in breast cancer detection.
Because I understand that the clinical debate about screening mammograms is far from settled, I’d like to share my own perspective and action plan in the hope that, over time, a new consensus will be reached.
Metastatic breast cancer is terrible, no question. But I agree with the writers of the commentary in the January 13, 2010, issue of the Journal of the American Medical Association that breast cancer is just as treatable and just as deadly regardless of screening. I’ve opted out of routine screening.
I might accept the statistical evidence that because I have a first-degree relative who had breast cancer, my own risk is increased, perhaps even doubled. But that fact doesn’t make screening any more valuable to me than it would be to another woman—unless I believe that early detection will guarantee a better outcome for me. I don’t.
I’ve made sure that my primary care physician accepts my reasoning and supports me in my choice, although I welcome information from him about new findings that might affect my decision.
I don’t do breast self-exams. There’s no evidence to support their effectiveness. But that’s not to say I don’t pay attention to my body. If I should happen to discover a lump in my breast, I’ll have it evaluated. I’m not opposed to having a diagnostic mammogram.
If I’m told a lump is cancerous, I’ll seek other opinions. The interpretation of cell changes can be subjective. I want two—or three—expert pathologists to concur on any changes in mine. In July 2010, a New York Times article titled “Prone to Error: Earliest Steps to Find Cancer” reported that there is often “outright error” in diagnosing breast cancer in its earliest stages, leading to unnecessary surgery, radiation, and drug treatment—as well as fear—for some women.
I won’t rush into treatment because I know that cancers don’t develop or spread overnight. Any cancerous lump I find has probably been growing for years. Of course I understand that there are exceptions.
If there are research breakthroughs that dramatically increase the value of early detection, I’ll rejoice and change my attitude toward screening accordingly. I accept that sooner or later, I’ll die of something. It could be breast cancer. It’s also possible that I’ll die with cancerous changes in my breast (or some other location) that never progressed enough to cause harm.
I won’t think less of any woman who continues to get screening mammograms. The weight of public and professional opinion is still on her side.
It’s been ten years since my last mammogram. I don’t have to wonder whether this will be the year for a false alarm, false reassurance, or discovery of a cancer that might or might not require treatment. I accept the fact that life is uncertain.
I’m grateful for the gift of good health, recognizing that that’s what it is: a gift. I will always mourn my sister’s untimely death, which took place three years after her diagnosis despite state-of-the-art treatment. If it were in my power, I’d honor her by redirecting the $5 billion this country spends each year on screening mammography to other purposes. I’d direct those sums instead to the study of how breast cancer starts, and what we can do to treat it more effectively.
AGREE or DISAGREE? Discuss this story here, where the author, Veneta Masson, will answer your questions.
Veneta Masson is a nurse practitioner and writer living in Washington, D.C. Her most recent book is a collection of poetry, Clinician’s Guide to the Soul (Sage Femme Press, 2008).
This essay from October’s edition of Health Affairs, is available at www.healthaffairs.org
The Narrative Matters section of Health Affairs publishes personal essays, based on firsthand encounters, that carry a health policy message. These “policy narratives,” a form of literary nonfiction, link a story or anecdote to the big picture. See the full list of published stories at http://www.healthaffairs.org/NM.php. Narrative Matters is published with support from the W.K. Kellogg Foundation.