Nurse practitioner explains why she refuses to endorse routine mammography
Monday, October 11, 2010; 5:03 PM
I knew I had a bladder infection. I knew it because I'd worked as a nurse practitioner for 20 years and had heard the symptoms described hundreds of times. But I wasn't in practice anymore, and I couldn't verify my own diagnosis or ask a colleague to prescribe antibiotic treatment. But I remembered that a nurse practitioner I knew slightly had opened a practice near my house in Northwest Washington. I grabbed the first appointment I could get.
In her office, I filled out a comprehensive health history, deposited a urine sample 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 said.
Maybe this: You're wrong about the anger and fear. My sister's cancer, discovered in her early 40s during the course of a routine physical exam, sent me into the medical literature with an insatiable hunger for information. It's this search for answers and 20 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.
I didn't realize it at the time, but at age 56, I had had what would be my last yearly mammogram.
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. I began to go 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.
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.
Then a few research reports began to filter into the media with a different point of view. They 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 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 shock friends when I admit that I'm no longer a member of the mammogram club. Unless asked, though, I don't 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 when 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 don't consider whether the outcome would have been 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 particularly well-sourced pamphlet, published online in 2008 by the Nordic Cochrane Center in Denmark, that describes what studies have actually found.
The center 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 www.cochrane.dk.) The information it provides is also available elsewhere, but I like the clarity of the pamplet as well as its list of solid scientific references.
"If 2,000 women are screened regularly for ten years, one will benefit from the screening, as she will avoid dying from breast cancer," the pamphlet says. "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 the pamphlet that I noted: It has not been shown that women who undergo regular screening live longer than those who don't.
Discord in the ranks
A Post headline late in 2009, "Fierce debate raging over new cancer test guidelines," came as no surprise to me. The U.S. Preventive Services Task Force had recommended that women in their 40s, as well as those older than 75, 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, an independent panel of experts in prevention and primary care that evaluated numerous studies, recommended a screening mammogram every two years, instead of annually, for women ages 50 to 74.
It also didn't surprise me that after the recommendations were released and a heated debate began, government officials were quick to backpedal from the task force's recommendations.
And the general public, including most health professionals, clung to the belief that early detection saves lives. The "routine" mammogram has become part of the cycle of the year for many women.
If you are the one in 2,000 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.
Metastatic breast cancer is terrible, no question. But I agree with a January 2010 commentary in the Journal of the American Medical Association that breast cancer is just as treatable and just as deadly regardless of screening. For that reason, 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 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 to avoid what a recent New York Times article reported was much "outright error" in diagnosing breast cancer in its earliest stages.
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 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'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 the study of how breast cancer starts and what we can do to treat it more effectively.
In the meantime, it's been 10 years since my last mammogram.
Masson is a nurse practitioner and writer living in Washington. Her most recent book is a collection of poetry, "Clinician's Guide to the Soul." This essay was excerpted from October's edition of Health Affairs magazine. It can be read in full at www.healthaffairs.org.
Here's the link: http:/