When my father was 14 years old, instead of dangling a fishing pole with his father on Saturday mornings, he dashed downstairs to assist him with tonsillectomies. Light fastened on his forehead like a coal miner, he peered past the tonsillar arch into the long tunnel leading to the
enigmatic interior, confirming what he had known since he was 5 years old: he too wanted to be a surgeon. Inquisitive, he questioned his father about the purpose of their mission. This was Brooklyn in 1935, a time when removing the tonsils was believed to be a prophylactic measure that would deter downstream health crises.
The tonsils were conceptualized to be the repository of streptococcal bacteria, the ubiquitous source of rheumatoid arthritis, nephritis, and rheumatic fever. To be a responsible physician meant helping patients to avoid harm. Consequently, two generations lost their tonsils to good medicine. Because the only indication needed for a tonsillectomy was an occasional sore throat and the presence of tonsils, business boomed for my grandfather in those Depression years. Mrs. Derringer, the nurse, made a salary of $8 per week, while the removal of each pair of tonsils cost $15. (This globally included the surgical fee, home-office operating room, anesthesia, and 6 hours in recovery.)
More than a dozen of these procedures were performed each day in my grandfather's basement clinic. The standard of care was plain and clear: the surgery relieved patients of otherwise anticipated pain and suffering, kept doctors in their position of useful service, and constituted a procedure that the profession had learned to do well. By the time I was 4 years old in 1950, my grandfather, by then at Long Island College Hospital, removed my tonsils. Today tonsillectomies are no longer believed to confer any protective benefit against degenerative disease. The original theory has been disavowed and the rate at which they are performed has plummeted.
Standards of medical practice are established by well-intentioned authorities first and, ideally, validated by science later. At this moment, Sally's head is covered in peach fuzz, though her chemotherapy ended 4 months ago. A 38-year-old mother of three (Billy, her eldest, is not yet 9), Sally joined the 184,000 women last year to be diagnosed with breast cancer, hoping not to become one of the 46,000 to die of the disease this year. She did not hesitate to comply with the advice of her doctor to undergo a mastectomy and the removal of a sampling of the lymph glands under her arm (to track traces of the disease that may have spread beyond the breast). When Sally awoke, still groggy, she asked, "How did it go?" Her physician replied confidently, "Don't worry, we got it all," and Sally, relieved, believed him.
Although there is no ambiguity on Sally's part about wanting to do whatever may be required to stay alive and raise her children, there is a woeful gap between our collective wish for a remedy for breast cancer and medicine's ability to furnish one. There is a further schism between what we know and what we do--a split that could be mended. Incongruities, misconceptions, and illusions surround the prevailing rituals employed in the management of breast cancer. Perhaps doctors, rather than being a syndicate of sinister conspirators, are prey to the simpler motive of wanting to rescue and redeem; and women, in their eagerness to be saved, are willing to surrender and endure, by any means necessary.
Reassurance by Sally's doctor is emblematic. Much of the profession has mistakenly confused its best hopes for women with a prognostic and therapeutic competence that does not exist. Regrettably, there has been no significant improvement in the survival of women in 100 years,1,2 despite publication of William Stewart Halsted's 1894 paper3 heralding his results on "operations for the cure of cancer of the breast." For an entire century, the principle of the Halsted mastectomy has been the corner stone for the management of breast malignancy, even though a review of the data reveals that mortality hardly declined between the years of 1925 and 1990.4
Science is nothing if not an attempt to let the evidence speak for itself, assume its own authority, contradict hypotheses once taken for granted, and, if necessary, remake the rules. Medicine, guided by science, takes its lead from that which is proven--if not in laboratories, then in clinical study. Its Hippocratic dictum is to do no harm, but what does this mean?
At a symposium on breast cancer in 1984, pathologist Edwin Fisher5 remarked, "Conceptual aspects of most diseases in medicine--such as breast cancer--have been notoriously rigid. Historically, practitioners have been resistant to change." Surgeon Anaxagoras Papaioannou6,7 comments that "[a] conceptual dichotomy has thus evolved: we accept breast cancer basically as a systemic disease but we persist in treating it primarily as a locoregional problem.... [T]here are some limited, uncontrolled, but intriguing data in women with breast cancer that suggest that the less physicians do, either by surgery, irradiation, or by both, the better the patients do."
After Sally was told she had breast cancer, she was unequivocal about what she wanted from her friends: absolute support for the decisions she was making. I had the impulse to share with her what I knew from 30 years of conversations with my father, whose specialty was breast surgery. But it was too late. She made it clear that to be her friend meant not to question her doctor's opinions. "He's not my congressman," she said, "he's my lifeline." Agitated by fear and muddled by the conflicting opinions of experts, she was focused single-mindedly on heeding her doctor's advice.
Breast cancer is a disease enmeshed in contentious debate. Friction does not revolve solely around techniques, but becomes heated as theoretical models diverge. Inquisitions have been held over contested portraits of reality. As irrefutably as diabetes is a medical rather than surgical problem, breast cancer wobbles across boundaries, straddling internal medicine, surgery, radiology, and oncology. Sally couldn't consider that anything other than surgical intervention would deliver and protect her from harm. In her haste to just want to make it better, she was incapable of considering her options.
Exposing and exploring the premises that have shaped the menu of current choices is itself worthy. How breast cancer is experienced may change as the perception of it shifts. In the summer of 1989 my father traveled to France to witness the early laparoscopic cholecystectomies--removal of the gall bladder via a surgical instrument inserted into small incisions in the belly rather than the former open--abdomen operation. At present, the newer, less invasive surgery has virtually replaced the former operation, reducing patient recuperation time and expense. Continuing with the old operation (except in special circumstances) is now considered unforgivable--no surgeons could justify the more extensive procedure. Yet lumpectomy for breast cancer has still not "caught on." Marc Lippman, a renowned breast cancer researcher, says, "I am puzzled as to what combination of educational, prejudicial, financial, and historical issues have failed to get lumpectomies going.... Most [women] do not choose mastectomies...." Yet they have them anyway. The problem, he said, "is the doctors" (Men York Times. I May 5, 1993).
Unlike gall bladder surgery, about which there is no controversy, different postulates underlie the rationale for mastectomy and lumpectomy. Until the 1960s, breast cancer was conceived as a methodical march from a central encampment outward like a company of soldiers filing from a barracks to outlying regions via two terrains: along mountainous muscles and through marshes of lymph. Now, it is indisputably held that cancerous cells travel to distant sites (metastasize) via the bloodstream. It is also indisputable that, in a majority of women, this happens years before a tumor is or can be detected. By the time detection has occurred, either by palpation or mammography, the tumor has been germinating for approximately 10 years.
The Achilles heel is that, whereas cancer originates in the breast, it has the potential to spread. The word "cancer" derives from the Latin meaning "crab-like" because it claws and crawls into other tissue. Women do not perish from the local problem, but from the systemic one--and whether or not they do, and when, is dependent on the biological properties of the tumor: how fast and aggressively it multiplies, scatters, and infiltrates. It is now believed that individual body ecology is also a factor--the relationship between the seeds of the disease and the body--soil in which they are planted. Some think that within this tumor--host relationship, immunity is as significant as the virulence of the malignancy. To know whether the tumor has shed cells that have migrated to other parts of the body is only possible in retrospect--after there is evidence of malignant breast tissue growing in the bone, liver, lungs, or brain. No satisfactory method exists for detecting micrometastases or the trajectory of single cells that travel through the blood and lymph--some finding a home and colonizing. Even less mechanistic theories have been proposed, suggesting that genetic factors (inherited or mutagenic) cause normal cells to transform and become malignant, a process that is wholly out of reach of the surgeon's scalpel.
It is all the more baffling fully aware of these data, Sally's doctor assured her by saying, "We got it all." What he meant was, "I hope that you have no cells maturing in a distant site, but there is no way for me to know that. What I know is that the 1.5-cm tumor that was in your breast is no longer there, and that this would be the case whether we'd done a mastectomy or lumpectomy. The reason I did a mastectomy is to prevent local recurrence, even though I'm aware that local recurrence itself has no impact on survival and that women who have lumpectomy live just as long as those who have mastectomy. Survival depends on the systemic picture." If the horse bolted before the stable door was shut, no repair of the barn or its latch will be of consequence. Similarly, no use will come of removing more and more breast, or the chest wall, or nearby lymph tissue, if the malignant cells have taken up residence in the femur, liver, or lungs.
By now it's well known: it is not necessary for a woman to lose her breast in an effort to save her life. Yet the majority of physicians still subscribe to the belief that mastectomy is the "gold standard," even though they are fully cognizant of equivalent outcomes for the less invasive lumpectomy. Despite the National Cancer Institute's (NCI) declaration in 1990 that lumpectomy followed by radiation is the preferred therapy (note 1), only 26% of diagnosed women today receive the breast-conserving lumpectomy. Most doctors advise in favor of mastectomies, and most women have them, demonstrating that data alone are not powerful enough to spur change--in medical or social practice.
In Vienna in 1848, for example, Ignaz Semmelweis discovered that women who died following childbirth of puerperal fever were infected as a result of physicians failing to wash their hands between deliveries. Yet because of the complete entrenchment of practice, doctors not only offered up great resistance to his ideas, but fiercely ridiculed him for suggesting that respectable physicians needed to wash their hands. Even though the death rate in Semmelweis's clinic dropped immediately, it was not until Louis Pasteur presented his theory of germs 3 decades later that routine cleanliness was integrated into practice.
Thirty years after encouraging the continuation of the war in Vietnam, former Secretary of Defense Robert McNamara8 said in retrospect that we should have left sooner. What is categorical and undisputed in one epoch may be reversed in another. One hundred years after William Stewart Halsted popularized what came to be known as the Halsted mastectomy, the large majority of women diagnosed with breast cancer still undergo a modified version of his procedure even though no good data indicate that mastectomies have ever effectively resolved the wracking actuality of cancer.