If we had to pick one, I'm unsure whether my family would select an Amazon or Saint Agatha for our mascot. The Amazons, a mythological tribe of warrior women, cut off their right breasts so they could better draw their bows, exchanging femininity for fearsomeness on the field of battle. They're even named for their breastlessness—a common derivation suggests it comes from the Greek a (without) mazos (breast).
At the other end of the spectrum, there's Saint Agatha, a Sicilian virgin who dedicated herself to God in the mid–third century. The Roman prefect Quintianus cut off her breasts because she wouldn't have sex with him or sacrifice to the Roman gods. You can tell that mostly male artists painted her, because she's often shown holding a plate with her disembodied breasts on it, gazing over them with dead eyes and a smooth, untroubled expression, as if these body parts meant no more to her than a plate of bread. In fact, she is the patron saint of bread and bell makers because her severed anatomy resembled buns and bells. She's the patron saint of breast cancer patients too.
The Amazons and Saint Agatha represent two extremes in how we narrativize cancer patients. On one hand, they are fierce, defiant warriors taking control of their health and doing the difficult thing to improve survival, no matter the side effects. On the other hand, they are martyrs, submitting to vicious disfigurement at the hands of the medical establishment, giving up something valuable to protect what is even more precious.
But people are complex and contain multitudes. Cancer patients or BRCA patients are neither simply martyrs nor warriors. In some form, both narratives imbue each mastectomy. Patients are actors in their own fate, and acted upon by modern medicine.
The novelist Frances Burney's account of her own mastectomy—one of the few patient-written narratives passed down from history—lays bare the underlying brutality of the operation. Her description in a letter to a friend nine months later is one of the most visceral, horrifying, death-metal things I've ever read. She didn't want to spend months dreading her operation, so she asked the surgeons to give her only a few hours' notice. One morning, a note came. The surgeons would arrive at ten o'clock that day—in two hours.
In case she died during the operation, she wrote notes to her husband and son. Then she drank a single wine cordial, and seven men in black entered her room without even knocking. They asked her to mount the bed in the middle of the living room. She couldn't move, locked in a moment of horror. "I stood suspended, for a moment, whether I should not abruptly escape—I looked at the door, the windows—I felt desperate."
But of course there was no escape. After a moment, "my reason then took the command, & my fears & feelings struggled vainly against it." Her maid wept by the door, and her two nurses stood "transfixed." The doctors tried to send the women away, but Fanny resisted them. "No, I cried, let them stay!" Two of the women broke and ran off, but one defiantly remained.
Anesthesia wasn't a tool yet. They placed an ordinary cambric handkerchief over her face, thin enough that she could see "the glitter of polished Steel" through it. They uncovered her breast, and one of the doctors made a circle in the air with his finger, indicating that they would take the whole thing off. This freaked her out, so she ripped the handkerchief off her face and sat up, explaining that all her pain radiated from a single point in her breast. But the doctors told her again that it must all come off, and firmly put the cloth back over her face. Then they started sawing off her breast while she watched them through the handkerchief. Here's how that felt:
When the dreadful steel was plunged into the breast—cutting through veins—arteries—flesh—nerves—I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision—& I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp & forked poniards, that were tearing the edges of the wound—but when again I felt the instrument—describing a curve—cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left—then, indeed, I thought I must have expired.
From then on, she kept her eyes shut so hard "that the Eyelids seemed indented into the Cheeks." For a moment, she thought they were done, but the cutting resumed. "Dr. Larry rested but his own hand, &—Oh Heaven!—I then felt the Knife [rack]ling against the breast bone—scraping it!—This performed, while I yet remained in utterly speechless torture."
She passed out at least twice from pain during the whole thing and could not speak of the operation for months. "Even now," she wrote, "9 months after it is over, I have a head ache from going on with the account! & this miserable account, which I began 3 Months ago, at least, I dare not revise, nor read, the recollection is still so painful." The operation lasted only twenty minutes, "a time, for sufferings so acute, that was hardly supportable."
The procedure was hell on her husband, who must have found out about the operation as it was happening. He added a few lines to her letter: "No language could convey what I felt in the deadly course of those seven hours." Reading Fanny's letter affected him. "I must own, to you, that these details which were, till just now, quite unknown to me, have almost killed me, & I am only able to thank God that this more than half Angel has had the sublime courage to deny herself the comfort I might have offered her, to spare me, not the sharing of her excruciating pains, that was impossible, but the witnessing so terrific a scene, & perhaps the remorse to have rendered it more tragic. For I don't flatter myself I could have got through it—I must confess it."
Fanny allowed seven men to do this to her, and she faced the horrific ordeal with unimaginable courage. She's both a martyr and an amazon. The miracle of this surgery, in an era without antibiotics, is that she survived the operation and didn't die from postsurgical infection. And her cancer—if indeed it was cancer and not a benign lump—did not recur.
Frances Burney's story, the story of how we used to treat cancer, is one of surgical radicalism. Until the advent of chemotherapy and radiation therapy in the twentieth century, surgery represented medicine's main tool for treating breast tumors. The Edwin Smith Papyrus (1600 BCE), which proclaimed breast cancer as having no cure, also recorded the cauterization of an identifiable breast tumor with an awful-sounding tool called a fire drill. According to a description written in 1296, Leonidas of Alexandria dealt with breast tumors by using a knife to remove the breast, and then cauterizing the wound. The ancient physician Galen was picky about which tumors he'd carve out—they had to be easily accessible. He also cut widely around the tumors to ensure he removed all of the mass—a practice that ensured clean margins—and he eschewed burning surgical sites because it damaged surrounding tissue. In eighteenth-century Europe, surgeons used horrible devices—bladed rings or pairs of blades—to cut off breasts swiftly, a procedure that often led to hemorrhage and disfigurement. From the late 1700s through the end of the following century, science sped along at a fast clip, although advances were patchy at best—known in certain areas of the world, but not others.
Japanese surgeon Seishu Hanaoka, for example, developed and experimented with anesthesia on his wife and his mother more than forty years before the West started investigating the field. In 1805 he put a woman under and performed a mastectomy—quite possibly the world's first painless breast removal—and by the end of his career he'd performed 150 of them. Unfortunately for the rest of the world, Japan lived under its sakoku policy of isolation at the time, which prevented the spread of medical breakthroughs. Meanwhile in France, surgeon Jean-Louis Petit published a work on mastectomy that recommended the removal of breast, lymph nodes, fat, and part of the pectoral muscle—a Halsted before Halsted.
All of these developments, combined with advances in anesthesia and the discovery that surgery required sterile conditions, set the stage for the radical operations of both William Halsted and William Meyer, published separately in 1894. Both operations removed breasts, lymph nodes, and different sections of pectoral muscles but detached items in a different order. Halsted's meticulous method took four hours, while Meyer slashed time by using scissors.
The brutal procedure became the preeminent breast cancer treatment for the next half century. It saved women's lives but left them stoop-shouldered and with limited arm mobility. The Halsted mastectomy is a relic of its era, when surgery was often meant to be palliative, not curative. Doctors saw plenty of late-stage tumors—many likened them to various sizes of bird's eggs—cases probably so far advanced they'd be incurable even by today's standards. Rather than let tumors ulcerate and burst through the skin, giving patients miserable, pained demises, doctors whacked off breasts as a humanitarian effort. That Halsted's mastectomy was able to improve the relapse rate to a mere 52 percent was extraordinary. Given the sorts of cancer he saw, it's understandable that he believed it to be a local disease with a local cure.
The upswing of less drastic procedures, such as lumpectomy during the twentieth century, is not merely the story of scientific advancements, such as chemotherapy and radiation. It's also the story of women rising up and demanding breast-conserving therapy; it's the story of how women's lib upended the relationship between mostly male doctors and their female patients.
In our culture, breasts have significance in a way that, say, the spleen does not. They are visible and eroticized markers of femininity, so breast surgery necessarily engages with our ideas of gender. As cancer culture historian Ellen Leopold points out, historically, the patriarchy has structured the relationship between mostly female patients and mostly male surgeons. She writes:
At its most reductive, the aura surrounding breast surgery reinforced the worst gender stereotypes, attributing all power to a male hero and all frailty to a damsel in distress. The surgeon was alert, erect, and skilled, and the patient, asleep, supine, and helpless—that is, without animating or humanizing virtues of any kind. Life-saving surgery, in other words, seemed to require the total degradation of a woman's spirit as well as of her flesh. This abasement, so integral to the surgical ordeal, was to color every aspect of treatment for most of a century.
Many early- to mid-twentieth-century practices for treating and talking about breast cancer prove Leopold's point. As she discusses, in the 1960s the authority of mostly male surgeons was unassailable. Surgeons could also decide what to tell patients about their conditions: doctors, too, had trouble choking out the word "cancer." One survey from 1961 found that 90 percent of physicians did not tell patients the truth—that they had been diagnosed with cancer—preferring euphemisms like "mass," "lesion," and "tumor." Doctors themselves viewed cancer with hopelessness and did not like delivering tough news; they also wanted to shield patients from feeling hopeless after a diagnosis. While doctors overwhelmingly preferred not to tell patients about their cancer diagnosis, patients—89 percent of them—overwhelmingly (and unsurprisingly) favored knowing their own diagnosis, according to a 1950 study.
This inequality in knowledge affected breast cancer treatment. As Leopold points out, "The fact that her surgeon was unable to communicate the results to her [the patient] directly did not deter him from acting on them unilaterally, that is, without her agreement." In the early 1950s, breast cancer survivor and advocate Fanny Rosenow called The New York Times to post a notice for a breast cancer support group she was starting. Her call ended up routed to the Times' social editor, who greeted her request with a pregnant silence. "I'm sorry, Ms. Rosenow, but the Times cannot publish the word breast or the word cancer. Perhaps you could say there will be a meeting about diseases of the chest wall."
She hung up, disgusted, and founded the organization Reach to Recovery with a fellow survivor named Tessa Lasser. My grandmother would participate in this program much later, as a cancer survivor, visiting other patients in their hospital rooms to talk about what to expect: one reality being that obituaries might also garb breast and ovarian cancer deaths in euphemisms such as "women's cancer," or "prolonged illness."
The public seemed embarrassed about cancer in general, but about breast cancer and other women's cancers in particular. This silenced women, denying their experiences to each other, refusing even to tell them the name of the malady killing them. Their only saviors were the Halsteds of the world who rode in on their white horses and carved out internal organs.
Surgery was viewed for so many years as the only way. Even after chemotherapy and radiation became available, until the mid-1970s it was standard practice to put a woman out for a breast biopsy and then remove her entire breast in one go if the tumor tested positive to avoid the inconvenience of putting her under general anesthesia twice. These breast biopsies mirrored the larger struggle around women's rights in the 1960s and 1970s. Who should have dominion over women's bodies—the women themselves or the male doctors who thought they knew best?
So let us sing the praises of journalist, breast cancer activist, and cancer patient Rose Kushner, who went after the one-step biopsy practice in the mid-1970s. In 1974 she developed cancer, and she wanted some time between biopsy and breast removal to decide on a course of action. She had to visit 19 surgeons before she found one willing to biopsy her tumor but not remove the breast. Eventually, she testified before NIH on the matter, arguing that a two-step procedure separating mastectomy from testing would allow surgeons to better assign stages to cancer and offered women the option of making up their own damn minds. After all, it wasn't the surgeon's life at stake but his patient's. Now, the two-step biopsy procedure is the worldwide standard for treatment.
As it turns out, Rose was a friend of my mother's cousin Kathy, who participated in her uprising, attending basement meetings for her new patients' rights groups in the early 1980s. Thanks to the advocacy of Rose and other women in the movement, my mother had a day to figure out what sort of treatment she wanted—a huge psychological improvement over my grandmother, who suffered great trauma from waking up after a biopsy with a brutal Halsted mastectomy.
In the 1970s, as it became more acceptable to talk about breast cancer, the women's lib movement also made strides in allowing women to assert sovereignty over their own bodies—for example, the right to abortion guaranteed by Roe v. Wade in 1973. As women demanded control over themselves, the relationship between doctor and patient changed; doctors no longer held a position of unassailable authority over patients. Rose Kushner and fellow journalist Betty Rollin published pieces questioning the necessity of radical mastectomies and heckled surgeons at medical conferences about how radical surgery had never been properly tested in a controlled environment.
In 1971, the Halsted mastectomy had its eightieth birthday, the anniversary of Halsted's first description of the procedure. And that year represented the beginning of the end for that operation. Surgery for actual cancer became less draconian, shrinking from removal of the entire breast to simple removal of the tumor.
In contrast, as scientists learned to pinpoint cancer risk with increasing accuracy, treatment for high-risk patients took the opposite path, culminating in the prophylactic mastectomy. Today, when the most advanced technology of all can look inside your DNA and find the tiniest error in code, the smallest blip of a mistake inside the cell nucleus, it can seem almost ironic that the treatment most on the rise is the removal of an entire organ. But how can you fight something as nebulous as uncertainty? How can you know if you're winning if the enemy is a ghost?
Excerpt adapted and published with permission from Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree by Lizzie Stark. Copyright © Chicago Review Press October 2014. Available in stores and online everywhere.
Image by Jim Cooke. Original painting: Venus of Urbino, Titian.