October is Breast Cancer Awareness Month, but what is it we need to be aware of? We know that for women, breast cancer is the most common cancer and, after lung cancer, the leading cause of cancer death. This month, pink ribbons and yogurt containers will remind us of the need to find a cure. But equally important is improving access to life-saving therapy for women already living with breast cancer — many of whom don’t even know it.
Delayed diagnosis of breast cancer — measured from the first health care consultation for a breast complaint to a diagnosis of cancer — is the most common and the second most costly medical claim against American doctors. Moreover, the length of delays in breast cancer diagnosis in cases that lead to malpractice litigation has been increasing in recent years. According to a study by the Physician Insurers Association of America, in 1990 the average delay was 12.7 months; in 1995 it was 14 months. The most recent data, from 2002, showed the average delay had risen to 16.3 months.
Why are there such long delays, even for women who get regular examinations? The insurers association identifies five causes: a misreading of the mammogram, a false negative mammogram, findings that fail to impress the doctor, the doctor’s failure to refer the patient to a specialist and poor communication between providers. Four of these five are preventable human errors (a false negative mammogram is a machine failure) and two — failure to make a referral and poor communication — are products of the way we organize health care.
The breast is something of an orphan in our health care system. We have cardiologists, nephrologists, hepatologists, proctologists and neurologists — but we have no “mammologists.” How did the breast get lost?
To answer this question we need to look at the division of labor in medicine and the history of specialization. In 1940, 24 percent of doctors were specialists; by the late 1960s, nearly 90 percent of medical graduates were entering specialty residencies. In the 1930s, obstetrician-gynecologists attempted to define themselves as surgeons specializing in women’s reproductive organs. But general surgeons had long considered all things surgical their exclusive turf, so obstetrician-gynecologists instead created a niche for themselves as “women’s doctors,” a kind of primary care specialty. They became the point of entry to health care for most women. Some were able to diagnose breast problems, but treatment of the breast remained for the most part with general surgeons.
When radiologists — specialists who can also diagnose breast cancer — appeared on the scene, another caregiver became involved in treatment. And radiologists were followed by radiation oncologists, medical oncologists, reconstructive surgeons and medical geneticists.
Women with breast cancer get lost in the mix, forced to make several different appointments, sit in various waiting rooms and see multiple doctors. In most cases, a woman with a breast problem will start with her obstetrician-gynecologist, who will then refer her to a surgeon (for a biopsy) or a radiologist (for a mammogram). The referring obstetrician-gynecologist may never see or hear from the patient again, and may not know if she kept her appointment or got adequate care.
Contrast this with the care given to women with gynecologic cancer. Because there is a subspecialty of gynecologic oncology, women see the same doctor from diagnosis to post-surgery follow-up. Breast malignancies outnumber gynecologic cancers 10 to one, and yet we have no subspecialty for breast care.
Why don’t more obstetrician-gynecologists perform the initial, minimal surgery required to diagnose breast cancer? The answer lies in the training of medical residents. Three organizations oversee the education of future obstetrician-gynecologists: the Accreditation Council for Graduate Medical Education, the American College of Obstetricians and Gynecologists and the American Board of Obstetrics and Gynecology. All three have different requirements regarding training in breast care. At the end of their years as residents, some obstetrician-gynecologists have a great deal of experience with the minimally invasive diagnostic procedures needed to respond to breast complaints and others do not.
Women with breast cancer need obstetrician-gynecologists who have learned how to diagnose breast cancers and breast care specialists devoted to shepherding them through surgery, therapy and healing. Given the haphazard growth in medical specialties and varied training programs for obstetrician-gynecologists, it is no surprise that there is a mismatch between patient needs and caregiver skills. Campaigns to raise awareness of breast cancer must do more than push for a cure. They must also seek to improve the way we organize care for those who suffer from this illness.
Ann V. Bell, a graduate student in sociology at the University of Michigan, Mark Pearlman, a professor of obstetrics and gynecology and the director of the Breast Fellowship Program at the University of Michigan Medical School and Raymond De Vries, a professor of obstetrics and gynecology and bioethics there.