In response to one of the most commonly diagnosed breast “cancers,” Dr. Shelley Hwang is staging a radically conservative campaign to save our breasts.
“It’s a terrible feeling,” says breast surgeon Shelley Hwang, MD. “It doesn’t feel good at all.” She’s talking about slicing into the flesh of a woman who could almost certainly live a long life without having one breast removed, let alone two. What it’s like to first use a marker to draw a hashed ellipse outlining a healthy (enough) breast, then take a scalpel and carefully cut along that line while a nurse blots away the seeping blood. To pull back the flap of skin with surgical hooks and go in deeper to carve the fatty yellow tissue surrounding the mammary glands away from the pectoral muscle, knowing as she does that she’s inevitably severing nerves that allow her patient to have feeling in her breast.
Hwang, the chief of breast surgery at the prestigious Duke Cancer Institute, isn’t just talking about the insult of surgery itself. It’s also the outcomes she encounters when patients come to visit her weeks or years post-mastectomy: the scars left on the skin, especially when they can’t be hidden on the underside of the breast. How dented and puckered reconstructed breasts can look, even when a skilled plastic surgeon does the job. The plane of skin where a nipple used to be (though Hwang is an advocate of relatively new nipple-sparing techniques: “Oh, your nipples look so good!” I heard her warmly exclaim to one nipple-preservation patient who’d opened her gown for inspection).
Hwang is also talking about post-mastectomy pain syndrome, the chronic nerve pain that stalks from 20 to 68 percent of mastectomy and lumpectomy patients (the range being so weirdly wide partly because the surgical community has not tended to rigorously study what happens after the cutting). She’s talking about the impact of radiation: the cosmetic darkening, not to mention the possible damage to the heart (it’s very rare, but it happens). And she’s talking about a patient she saw some 15 years ago, when she started her own practice at the University of California Medical Center in San Francisco: “I had a woman in her early forties. She was single, had never been married, had never had kids. She decided to have a mastectomy, and she was never the same. It ruined her life. I’m being dramatic, but she’s very insecure about dating; she’d come back and see me frequently, complaining about this or that little thing. And it really made her a lot less effective as a human being. That was really sad for me.”
Perhaps this description of a mastectomy seems unnecessarily negative or graphic, but in the current cultural context—in which writer Elizabeth Wurtzel, in a piece for Vice magazine about her upcoming double mastectomy, crows that she’ll “go in with breast cancer and come out with stripper boobs” (perhaps it is false bravado born of fear, but still); and in which, as an editor, I was pitched a story by a woman who was secretly glad she had a spot of breast cancer so that she could get the boobs she’s always wanted in a reconstruction—casting a coldly realistic eye on surgical treatment for the disease might be useful. Because this isn’t a story about women with aggressive malignancies whose lives are saved or significantly extended thanks to a mastectomy—or even about those like Wurtzel, who tested positive for a BRCA gene mutation, meaning that her chances of getting breast cancer again are much higher than normal. It’s about women with the same condition Hwang diagnosed in the patient from long ago, the one whose post-mastectomy life was so compromised: The woman had pre-cancer, a cluster of abnormal cells called ductal carcinoma in situ (DCIS). It’s an entity that isn’t cancer and will never become cancer in an estimated 70 percent of cases (though that figure is based on limited data, because when mammograms began detecting DCIS, the standard quickly became to surgically remove it, so its natural history has never been well studied). And if the condition does progress at a later date, it can almost always be successfully treated.
So what is DCIS? Diagnosed by a pathologist looking through a microscope, it’s basically cells that are unduly misshapen—there is always some variance in cells’ appearance and size—and that show evidence of division. They’re contained within one or more of the tiny tubes or ducts that deliver milk to the nipple, and they will become cancer only if they keep dividing and break out of the duct—which, again, may or may not happen. For instance, pathologists in about a half-dozen autopsy studies have looked for DCIS in the breast tissue of women who’d never been diagnosed with it and had died of something else. They found the condition in anywhere from 2 to 16 percent of patients. (The gap in the findings, according to Gilbert Welch, MD, the author of Should I Be Tested for Cancer?, is likely a function of how hard pathologists looked for DCIS. In the study that picked it up in 2 percent of women, 9 slides were inspected per breast; in the two studies reporting an incidence of 16 percent, 95 and 275 slides were examined, respectively.)
“I don’t want to spend most of my time operating on people who aren’t going to benefit from me,” says Hwang, who exudes a gentle passion. “Traditionally surgeons have just thought, ‘As long as we do whatever we can to reduce the chances of ever having cancer, our job is done.’ And we don’t care if patients are going to be living with all sorts of reservations about how they feel about their bodies and how they interact with the world, about how much pain they’re having. And I think that’s wrong. It’s just not reflective of what we know in 2015.”
Which is why for more than a decade now, Hwang has devoted herself to trying to stop the freight train of overtreatment for DCIS—which accounts for 25 percent to 30 percent of annual breast cancer diagnoses, a figure expected to grow as mammography and other imaging technologies become more powerful. Hwang’s campaign is a many-pronged effort: She’s overseeing multiple studies with the goal of more rigorously classifying— via imaging, pathologic examination, and genomic testing— which kinds of DCIS are most likely to break out of the ducts and become cancer. Based on what’s already known, she takes any chance she can get to urge her fellow doctors to reconsider how they treat DCIS, trying to change the standard of care “one meeting at a time,” as she says. And she’s working one patient at a time, too, proactively offering women with DCIS what’s dubbed “watch and wait”: Instead of following current protocol and doing a mastectomy or a lumpectomy followed by radiation, she brings these women in more frequently for MRIs and mammograms to track whether their condition is changing or has become stage I cancer, at which point more aggressive treatment can start. (Most watch-and-waiters are also prescribed a hormone-blocking agent, such as the anti-estrogenic medication Tamoxifen, which can prevent cancer from developing and spreading.)
Hwang stresses that she would never recommend “active surveillance,” as watch-and-wait is also known, to all DCIS patients. Women in whom the condition is extensive, or who have BRCA gene mutations, HER2 positive cells, or a family history of breast cancer may want to move quickly to surgery. The same is true for those who are under 50; age matters because younger women have more years in which to develop cancer, tend to suffer from more aggressive disease, and are further away from developing other life-threatening illnesses, such as heart disease.
So unusual is it for breast surgeons to accept—never mind offer—active surveillance to anyone, however, that when I thought I might be diagnosed with DCIS myself and was hoping to avoid surgery and radiation, I was told by an expert in the field that she knew of only two doctors nationwide who’d “partner with me” in that approach. One was Laura Esserman, MD, at the University of California, San Francisco; the other was Hwang, 500 miles from my home in New York, in Durham, North Carolina.
In a darkened room, Hwang is leaning over the shoulder of one of Duke’s radiology fellows, Lars Grimm, MD, peering at the milky white image of a breast on a large computer screen. “Are you really impressed by that?” she asks Grimm. “It doesn’t look like that much is going on…. I know this one is going to want to have a bilateral mastectomy, so I want to have as much as possible.” What she wants is evidence, to prove to herself as much as to the patient she’s about to see—a 40-year-old mother of two named Amy Tretola—that a double mastectomy is in fact indicated. Although Tretola has DCIS, and only in her left breast, Hwang has read her file; she’s been working as a surgeon for 25 years, and she can usually guess which patients will want to go all the way.
Grimm shows Hwang the picture again, with higher magnification, and several clumps of what are known as microcalcifications come into view. Microcalcifications are calcium deposits in the ducts and are the mammographic indicator of potential DCIS. “Okay, I didn’t actually see all those calcs on my monitor,” the surgeon says, reassuring herself that if Tretola wants aggressive surgery, she can stomach it. Down the hall she goes in her white coat, black pants, and wedge-heel black boots. “You can see how unrelenting this is,” Hwang says before pushing open the door to the examining room. “The decisions we constantly have to make, the uncertainty.”
Tretola is sitting expectantly on the end of the examining table in jeans, a long-sleeved T-shirt, and slipper shoes, as if she had been too distraught or distracted to do anything other than pick up whatever clothes were lying on the bedroom floor. Her husband is in a chair off to the side.
Hwang grabs a high stool and takes a seat in front of Tretola to discuss her situation and family history: Her father died of pancreatic cancer at 49, her mother of lung cancer at 58. “Isn’t there someone in your family who had cancer at 39?” Hwang asks, sounding perplexed, and apparently mistaking the age at which her father was diagnosed with pancreatic cancer.
“Just me, I guess,” Tretola replies ruefully, who had the suspicious finding on her mammogram just before her 40th birthday.
“Yes, we’re here to talk about that,” Hwang says. “I don’t know that you actually have cancer yet.”
Tretola doesn’t suddenly look relieved or even particularly curious. She’s as tightly wound as when Hwang first walked in.
The doctor continues: “I think everybody understands that when you have invasive cancer, it spreads, and we know what we need to do with that. DCIS hasn’t become cancer yet, and we really don’t know what would happen if we left it alone….With DCIS, we’ve all gotten into this mode [of surgery and radiation], so it’s really hard to dial back.”
Hwang finishes up her short tutorial by explaining active surveillance, then adds, “I think for some people it’s the right thing to do. Your situation is a little different because of your family history, and it’s also concerning that you’re 40.”
“If you tell me you’re free to do surgery right now,” Tretola bursts out, as if she can’t stand listening to Hwang’s minimalist nonsense one more second, “and you can take it all off, I’m free!” She’s smiling now. “I want them both gone, frankly.”
“So you’re pretty sure what you want?” Hwang says, stating the obvious. “No more discussion is necessary?”
“I think for my sanity, that’s what I want. I know this one is fine,” Tretola says, referring to her right breast, in which there were no abnormal findings. “But I think it’s gonna turn traitor eventually.”
They go on to discuss reconstruction and then nipple preservation. “Someone else in this room is very concerned about that,” Tretola says, glancing at her husband, who’s uttered barely a word. Now he smiles weakly. “But I couldn’t care less about it. If they can be saved and not cause me problems in the future, that’s fine.” She’s on the verge of tears.
Hwang, the mother of three teenagers, rolls her stool closer to Tretola and puts her hands on her knees. She looks into her eyes. “You’re going to live happily ever after,” she says quietly. “And I’ll see my kids graduate?” Tretola’s voice is small, pleading. She has a 7-year-old son and an 11-year-old daughter. “And you’ll see your kids graduate,” Hwang replies.
Tretola grins through her tears. But before the appointment is over, she declares cheerfully, “I’m telling you, they’re traitors. Get rid of them!”
It’s stunning, really, the continuing resonance of the cancer-as- war metaphor famously identified almost 40 years ago by Susan Sontag. Though Sontag, who died of leukemia in 2004, wouldn’t have been surprised by it. The irrational fears that cling to a disease, and that can define how people think about themselves and their treatment, only give way when a straightforward cure becomes available, Sontag theorized, and the mystery vanishes. (In her classic Illness as Metaphor, she compared cancer to tuberculosis, which, with the advent of antibiotics, quickly lost its reputation as an affliction of poets and romantics.) The power of the C word is one reason Hwang and others of like mind have advocated eliminating “carcinoma” from the name of DCIS, though so far the effort hasn’t really caught on. (To test the idea, Hwang co-authored a study in which three groups of subjects were given a description of DCIS similar to the one offered to Tretola, but the condition was called alternatively a “breast lesion,” “abnormal cells,” and “noninvasive breast cancer.” The women were then asked to choose a treatment; when the word “cancer” was used, half in that cohort wanted surgery, as opposed to active surveillance or medication. With the other two descriptions, only a third of patients opted for surgery.) Whatever DCIS is called, the resistance to treating it less aggressively isn’t driven solely by semantics and the attendant fear among patients. We are where we are because of both the mind-set and mores of doctors and women’s preferences, which have been shaped by the massive publicity given to breast cancer. (Pop quiz: What is an American woman’s chance of dying of the pink-ribbon disease? The answer is 3 percent—isn’t it surprising to think that 97 percent of us will die of something other than breast cancer?)
Oncologist Siddhartha Mukherjee, in his monumentally fascinating, Pulitzer Prize–winning history of cancer, The Emperor of All Maladies, tells the story of William Halsted, the surgeon who in the late 1800s pioneered the mastectomy, which grew increasingly “radical” over the next century. “A macabre marathon was in progress,” Mukherjee writes. “‘Radicalism’ became a psychological obsession, burrowing its way deeply into cancer surgery.” Disfigurement from the operations was devastating—”the shoulders caved inward as if in a perpetual shrug,” the arms rendered useless by the cutting through the pectoralis major; the ribs, the entire chest wall, all the surrounding lymph nodes, and even the shoulder were sometimes removed. In the face of this, a series of surgeons tried and failed to persuade the profession that extracting the tumor or just the breast tissue alone could be equally effective, Mukherjee reports. It wasn’t until 1971, in fact, that a Pennsylvania doctor named Bernard Fisher managed to start a large, multi-hospital trial to compare radical mastectomies to more conservative procedures, and then it took 10 years to complete the research because so few academic surgeons—”their slip-covered feet dug into the very roots of radical surgery”—would dare, or deign, to refer patients to the study. The results, we now know, were that there was no difference in mortality or even relapse rate whether patients were treated with a radical mastectomy, a simple mastectomy (just removing the breast tissue, and maybe some lymph nodes, as is the standard today), or a lumpectomy (excising the tumor alone) plus radiation.
That was in 1981, and even then, lumpectomies were hardly embraced overnight. Jean-Marc Cohen, MD, a 50-year-old pathologist at Mount Sinai Hospital in New York whom I interviewed about my own biopsy, laughingly told me how senior surgeons reacted to the lumpectomies he and his younger colleagues were performing on patients in the early ’90s. “[They] thought we were murderers!” he said. “They thought we were insane.”
Another factor maintaining the DCIS status quo, what Hwang calls “the elephant in the room,” is doctors’ potent fear of being sued. There are at least three sets of specialists who are vulnerable to failing to find or adequately treat DCIS. The first are the radiologists, who examine mammograms to decide which configurations and concentrations of calcium deposits to refer for biopsy to determine if they’re DCIS. The second are the pathologists, who actually look at the cells under a microscope and decide which are funky enough to be deemed DCIS versus “atypical,” or benign. And finally, there are the surgeons, who recommend treatment to patients. “In this medical/legal environment,” as one doctor told me, it’s daunting to be the one to make the first move, especially when the research isn’t as solid as many physicians would like. Yet in Europe, where malpractice actions are less frequent and DCIS is less frequently treated, the breast cancer mortality rate is very similar to ours.
Indeed, when I visited the main breast-imaging room at Duke—a darkened cave circled by a half-dozen glowing computer screens, and where the conversation runs like this: “Can we all agree that we don’t see anything suspicious? So no ultrasound?” “Yeah, we’re done, breast out”—the chief radiologist in the department, Jay Baker, MD, seemed to want to make it known that his people aren’t always down with surgeon Hwang’s mission. “We follow this,” Baker says, showing me the ACR BI-RADS Atlas, fifth edition, or what he called the “bible of radiology,” a thick book of images and case studies that radiologists use to determine if what’s on their screens is more likely to be breast cancer or DCIS or benign. A few minutes earlier, when junior radiologist Sujata Ghate, MD, seemingly realized that her chief, Baker, was overhearing her talk a bit enthusiastically about Hwang’s studies to reduce the overtreatment of DCIS, she suddenly said, “Our job is to find all cancer—and all DCIS—until someone tells us differently.”
Breast cancer specialists do know more about DCIS than it might seem, however. First, pathologists can classify it as low grade (about 25 percent of samples), intermediate (about 50 percent), or high (25 percent), with the highest grade thought to be most likely to progress to cancer.
Equally important, the medical understanding of cancer as a whole is much more sophisticated than it was even 15 or 20 years ago. As the thinking goes, cancer isn’t one disease but many, and cells can stop dividing altogether, grow slowly, or grow quickly. One reason doctors are sure DCIS is overtreated—and nearly everyone agrees on this; the debate is about whether enough is known to decide which patients can be watched—is that while the incidence of DCIS has skyrocketed over the past 40 years, the number of invasive breast cancers has declined only slightly, not as much as would be expected if we were “catching” cancer in the early stages by detecting DCIS. In other words, all so-called cancers aren’t destined to progress; we all harbor reservoirs of the disease.
It’s a theory that has been widely accepted for prostate cancer, where active surveillance has become much more common. One obvious reason for this is that prostate surgery often causes impotence (and incontinence)—and the magnitude of that loss is something most men and, not incidentally, male surgeons instantly grasp. Women may not respond as viscerally to what Susan Love, MD, the dean of breast surgeons in the country, calls the “collateral damage” of mastectomy: the loss of sexual feeling, pain, disfigurement, and emotional consequences. And their doctors, the vast majority of them men—because the vast majority of all surgeons, in all specialties, are men—may not express the damage particularly poignantly. Here’s how Love describes plastic surgeons’ patter with potential mastectomy patients: “‘We’ll take them off; we’ll make you new ones. They’ll look normal, they’ll feel normal.’ What they mean is normal to them, because you’re not going to have any sexual feeling at all.”
While practicing in San Francisco, Hwang says she followed about 20 women who chose active surveillance for DCIS; now she is doing the same for 20 to 30 women at Duke. She introduced me to three of the local patients, all of whom sought her out because they heard she might be amenable to their hope to bypass surgery and radiation.
J. Brown (she asked that I not use her first name), a mother of three and a former admissions director at a private day school, says that when she was diagnosed with DCIS in three of the four quadrants of her right breast two years ago, an oncologist told her that because her condition was so widespread, a mastectomy was her only option. “I was like, ‘Wait a minute, could you just stop right there?'” Brown recalls the conversation. “‘You’re telling me I don’t have cancer cells?’ ‘Yes, there’s no presence of cancer cells.’ ‘And I should still have a mastectomy? It doesn’t make sense!'”
Brown—who does not have a family history of breast cancer, the BRCA mutation, or any other risk factors for the disease—found Hwang through her husband, who is a physician at Duke (another of the DCIS watchers I met was a physician’s assistant married to another, doctoral-level physician’s assistant). “I was lucky,” Brown says of her connections. “It’s not so easy for everybody to obtain the information.” After all, her oncologist had been emphatic: “Any surgeon I send you to, they’re going to take one look at your slides, and it’s going to be a mastectomy.” Her friends and acquaintances also had strong opinions, Brown says. “When I first decided to go in this direction, I got very mixed and self-righteous reactions. ‘Oh, if I had that diagnosis, I would get everything cut off. You’re crazy, you’ve got three kids.’ They think it’s a vanity thing—stop being so attached to your body, it’s just a breast. But it’s a really serious operation that you can have side effects from for the rest of your life.”
For all her desire to avoid a mastectomy if she could, Brown said that for the first year—in which Hwang brought her in periodically for MRIs to track any changes in her DCIS—”I was running around with a panic about it in the back of my mind, because you feel like these people who are choosing [surgery], they’re not messing around. It’s very enticing.” But Brown said she settled down about 15 months out, when yet another imaging test showed her DCIS wasn’t changing. Of the roughly 50 patients Hwang says she’s followed, a “couple of them” have gotten cancer. But when I ask if all of them are still alive, she sounds surprised. “Oh, yes, yes,” she says, “we haven’t lost anyone!”
This might sound cavalier, but here’s how Sheldon Feldman, the chief of breast surgery at New York–Presbyterian/Columbia University Medical Center, describes DCIS to the newly diagnosed: “Your chance of dying from this disease with 40 years of follow-up approaches zero. The only way someone could die from DCIS would be either if it’s completely not treated and they’re not surveyed for a long time, and it turns into invasive cancer and then spreads—or if they have treatment and then they disappear, don’t have any checkups, and show up with a big lump many years later.” (This isn’t quite true, Hwang points out: Using projections because of the lack of direct data, she puts the chances of dying of breast cancer in the 10 years following a DCIS diagnosis at 2 to 3 out of 100 for those who have a lumpectomy or mastectomy, and 2.5 to 4 out of 100 for those who go for active surveillance.)
Though he’s flown more under the radar, Feldman is a New York surgeon who will watch DCIS with patients who want that (about a dozen so far), though he estimates only about 15 percent of his colleagues in the city—despite its concentration of boundary-pushing academic medical centers— “would be agreeable” to doing the same. In addition to legal fears, Feldman says many doctors are just more comfortable doing what they know and have been doing for years. “But somebody has to be the one who pushes changes,” he says. “If it’s a nonlethal disease, how much torture do we want to put women through to make sure they stay healthy?”
Susan Love has made her career on challenging the dogma of her profession from a female point of view, but she says that she understands, to a point, her fellow surgeons’ leeriness about watch-and-wait. The problem, as she sees it, is that none of the imaging technologies is good enough for first-rate surveillance. She and Feldman are both researching a technique that they believe could revolutionize the tracking and, potentially, the treatment of DCIS. It’s called intraductal therapy, and it involves putting a miniature endoscope through the nipple into the ducts, which allows doctors to see inside them. (Love compares DCIS to rust or polyps on the duct walls.) Love and Feldman are also investigating whether DCIS can actually be eliminated by injecting treatments that they liken to Drano into the duct: a dose of a chemotherapeutic agent or an estrogen blocker. In other words, no cutting, no radiation, just a localized treatment.
Though Hwang has more faith than Love does in MRIs and mammograms for active surveillance, she, too, is intrigued by the prospect of intraductal approaches (and is a co-author of at least one paper on the subject). “It’s early days, so we’ll have to see,” Hwang says. “But any creative thinking about this problem is highly encouraged; we got into this mess because we weren’t thinking creatively.” Love is more blunt: “We have such an industry of cutting off breasts and replacing them that people haven’t gone there. They’d rather over-treat than figure it out.”
Amy Tretola got the double mastectomy she wanted on February 17. Her husband handed out Mardi Gras beads to the medical team before the operation, since, as Tretola put it, “Mardi Gras is known for flashing your boobs, and I was definitely gonna flash mine.” She’s still recovering and hasn’t yet had her reconstruction, but so far, she says, she’s happy with the result.
Because of Tretola’s age, her family history, and how much DCIS was in her left breast, Hwang says that ultimately she thought Tretola made the right decision in having the breast removed. As for the right breast, there was no medical indication for a mastectomy, Hwang says, but she certainly wasn’t going to “fire” her patient over her choice. “In that situation, we let patients know this is not going to extend your life a day longer, but if this is something you feel you have to do to move on with your life, I don’t see my role as stopping that.”
And in the end, if surgeons actually start giving women all the treatment options for DCIS, if they fully discuss the potential downsides to surgery as well as the potential downside to watch- and-wait (namely, the slight increase in a woman’s chances of dying of breast cancer), it may be that there are “very few takers” for active surveillance, Hwang says. “If it’s just too scary a proposition for women, then maybe there’s really no progress we can make here.”
Hwang isn’t ready to concede that, however, in large part because so many of her colleagues aren’t yet having careful conversations with patients. “It’s just so much easier to tell people, ‘You have breast cancer, and, oh, aren’t we lucky we caught it early and saved your life.'”
Though, as ever, the current state of affairs can’t just be pinned on the medical profession; it’s the back-and-forth between doctors and women that will change the course of treatment. “It’s the pinkification problem,” Hwang muses. “Everyone knows somebody who’s died of breast cancer, and, by God, it’s not going to happen to them. And the only way they think they can make sure it doesn’t happen to them is if they get both breasts removed.” Hwang wouldn’t for a minute want to take back the “power” that the breast cancer campaigns have given patients, but the irony—and the conundrum—to her is that “women are exercising their new power to do something that’s kind of self-destructive.”
As I mentioned earlier, when I expected to get a DCIS diagnosis last fall, I knew that I wanted a chance to consider active surveillance. Although I don’t have a physician for a husband, like J. Brown, I’ve been following breast cancer as a journalist for more than 20 years, which is how I learned about overtreatment of DCIS. I’m also on the “doubter” side of the “believer–doubter” continuum laid out in Your Medical Mind, a book on medical decision-making by Harvard physician Jerome Groopman, MD, and his physician wife, Pamela Hartzband, MD. I’m not a person who rushes to the doctor when I’m feeling sick, or who believes there is a fix—technological or otherwise—for every problem. When I have an ache or pain, I tend to think it will go away on its own, and luckily, I’ve usually been right so far. With this kind of medical mind, however, I have to guard against being overly fatalistic; I believe in Western medicine and am awed by the progress that has been made over the past century. I want to take advantage of treatments that can really lengthen my life or improve its quality, no question.
Still, I was pretty sure watch-and-wait would be the route for me—that is, until the night before my appointment with a surgeon to discuss my biopsy findings. Then I started berating myself for being reckless: You have two kids; you have to do whatever the surgeon tells you; you have to throw the book at it; who cares what you believe or want?
As it happens, the surgeon informed me that I didn’t have DCIS, but rather a “minute focus of atypical lobular hyperplasia,” misshapen cells not in the ducts but in the lobes of the breast, where milk is made. ALH is less common than DCIS and is considered to be something that increases one’s risk of getting breast cancer but that does not itself need to be treated. I was told to have a follow-up mammogram at six months and then return to a yearly schedule if no changes were detected. This is how Hwang hopes many cases of DCIS eventually will be handled: as a risk factor for breast cancer that requires close monitoring, rather than surgery and radiation.
My point isn’t the randomness of medical classification. “Somehow DCIS ended up in the cancer camp rather than the risk-factor camp, and all my work is to push it back,” Hwang told me. What I’m trying to get across is how complicated it is to make decisions about treatments whose value isn’t clear, even for a doubter like me. First, there’s the worry that I might be cheating my 11- and 15-year-old daughters out of a mother (most of Hwang’s watch-and-waiters don’t have small children, she says, and that’s not a coincidence). But it’s more than that. I’m scared of dying, like a lot of people, and when you’re scared, it’s hard to think clearly. It’s hard to go through the costs and benefits of a treatment, or to absorb the numbers and realize that the chances of DCIS killing me are infinitesimal, so small that I’d rather not undergo a surgery that, at best, will put a damper on my sexual pleasure and at worst will leave me with pain, or deep insecurity about my appearance, or the need for repeat surgeries.
Had I been diagnosed with a small amount of DCIS and advised by my doctor to nonetheless have surgery or radiation or both, I think I would have joined the active-surveillance corps. But I wonder: Could I have remembered—accepted— that we all have to die of something?