As You Like It: Expert Advice

By Joan Florek Schottenfeld

Medically it has never been easy to be a woman. During the 5^th and 4^th centuries in Greece, female hysteria — which stems from the Greek word for uterus — was described extensively in gynecological treatises. Plato describes the uterus wandering throughout a woman’s body, strangling the victim as it reaches the chest. Hysteria continued to be a common diagnosis made in women for many hundreds of years in Western Europe. During the Victorian era women suffering from it åsupposedly exhibited a wide array of symptoms including a tendency to cause trouble. That would make me the queen of hysteria.

We may be living in the 21^st century, but women still suffer from the caprices of medical science. For years doctors convinced women that they needed hormone replacement therapy (HRT) to combat the symptoms of menopause and to protect them against osteoporosis and heart disease. Then the results of the Women’s Health Initiative were released in 2002. This landmark study followed more than 16,000 women, assessing the effects of HRT. The findings revealed that hormone therapy not only failed to protect against heart disease, but was shown to increase the risk of heart attack, breast and uterine cancer.

Told to immediately stop HRT, women were confused and angry. For years they had been following their doctors’ orders, convinced that they were ensuring their health and longevity. Instead, it seemed, they were ensuring a risk of early demise.

Women have learned many things in recent years: that it’s not true that women do not suffer from heart attacks as much as men — it’s just that our symptoms are different and often go unnoticed. We’re also learning that the reason urologists diagnose so many of us with a blanket, catchall disorder, interstitial cystitis, or painful bladder syndrome, is because they have no idea what causes it or how to treat it because no one has done any meaningful research on the issue. That does not, however, prevent doctors from ordering painful, invasive tests and dispensing random medication in the hopes that something might eventually work.

And now we have the latest news to grapple with. For years women have been told that starting at age 40, they should be getting yearly mammograms to detect breast cancer early. But now the Preventative Services Task Force, having completed a five-year update of its original study, has concluded that is no longer the case. Their newest recommendation is for women to begin mammograms at age 50 and then every other year thereafter. And once again women are confused and angry, especially since this reversal is taking place during our country’s first major health care overhaul in years.

But this time, unlike the HRT fiasco, women are fighting back with their personal experiences. They are telling their stories of how early detection saved their lives and the lives of their mothers, sisters, daughters and friends, and they are not accepting the latest recommendations without a fight. After all, as we all have heartbreakingly learned, these studies are not infallible. We cannot blindly depend on the experts any longer.

Judy Ockene, a disease prevention specialist at UMass Medical School who was a member of the task force, is caught in the center of this maelstrom. As a daughter whose mother was diagnosed with breast cancer at age 44 and who has two daughters of her own, she understands the confusion that women are battling because of the latest findings. But as a scientist she feels that scientific evidence should be paramount.

“There was,” Ockene said, “never any contest between personal experience and scientific evaluation as she weighed the evidence on mammograms. Nor, she added, should there be.

“We all have our own stories about cancer but evidence is extremely important in all the work we do in health care. Does it mean it’s more important than all of the personal experiences? Well, I think it does. The evidence has to speak for itself.’’(Boston Globe, 12/28/09, Steven Smith)

Dr. Laura Esserman, a breast cancer specialist at the University of California, San Francisco, believes that, “There’s a cultural acceptance that more is always better, and that explains why our health care costs get out of control. We have to understand there are limits to what we can do.’’ (Boston Globe, 12/28/09)

I find myself caught in the middle. While I agree that scientific evidence usually trumps anecdotal evidence, I can’t help thinking of all the scientific evidence that had at one time been accepted as final, only to be disproved later on. I believe that there are no absolutes in this universe — especially when you’re sitting in a waiting room, dressed in an ill fitting smock, anxiously waiting your turn for a mammogram. There you sit, surrounded by women whose entire world, like yours, has been reduced to those moments and the machine down the hall. Just as in foxholes, there are no atheists in mammogram waiting rooms.

You would make a bargain with the devil to ensure a good reading — and scientific evidence is the farthest from your mind.

So we must become our own experts, our own advocates. Only we know what we feel comfortable with and what we need.

And we can only hope that the powers that pay for our health care believe in us or our newfound expertise will be in vain, held hostage to the vagaries of research and the bottom line.

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