“What if I decide to just do nothing?”
It was kind of a taunt, Desiree Basila admits. Not the sort of thing that usually comes out of the mouth of a woman who’s just been diagnosed with breast cancer. For 20 minutes she’d been grilling her breast surgeon. “Just one more question,” she kept saying, and her surgeon appeared to her to be growing weary. She was trying to figure out what to do about her ductal carcinoma in situ (DCIS), also known as Stage 0 breast cancer, and she was already on her second opinion. The first surgeon had slapped a photograph of her right breast onto a viewer, pointed to a spot about 5 cm long and 2.5 cm wide and told her there was a slot open the following week for a mastectomy.
Basila’s first reaction to her diagnosis was an animal-instinct panic that she registered as “10,000 bricks” crushing into her chest when she woke up in the morning. After that, Basila, who is now 60 and teaches high school science in San Francisco, did a little research. She learned that there were a lot of unknowns about the progression of DCIS, which is noninvasive–it’s confined to the milk ducts–and is the earliest stage of breast cancer. She also learned there was some disagreement in the field about how to treat it.
She knew she wasn’t ready to have one or both of her breasts cut off. And she wasn’t sure she wanted a lumpectomy either. That’s why when Dr. Shelley Hwang, then a surgeon at the University of California, San Francisco (UCSF), recommended a lumpectomy, Basila grew frustrated. She was coat in hand and ready to walk out the door when she issued that half taunt. And when she did, Hwang said this: “Well, some people are electing to do that.”
Basila sat back down, and as their meeting reached the hour mark, she made a choice that humans are practically hardwired not to make in the face of a cancer diagnosis: she decided to do nothing.
Well, not nothing, exactly. She would start taking a drug called tamoxifen that blocks estrogen, which can fuel tumor growth, and she would enroll in a clinical trial involving active surveillance: twice-a-year visits in which she would get mammograms alternating with MRIs. As long as there were no worrisome changes, Basila would be spared the standard arsenal in breast-cancer treatment: surgery, radiation and chemotherapy.
That conversation took place eight years ago. And if it sounds radical today, it was all but heresy back then. This was before the U.S. Preventive Services Task Force said in 2009 that women should start mammograms at 50, not the previous guideline of 40, because there’s insufficient evidence that earlier screening does more good than harm. Before research showed that for some women with Stages 1 and 2 breast cancer, the absolute survival benefit from preventive double mastectomies is less than 1% after 20 years. Before the paper in August showing that no matter how a woman is treated for DCIS, the mortality risk is 3%–similar to the average for the general population. And before the news that some women with early-stage breast cancer don’t benefit from chemo and can skip it.
In other words, that conversation took place before doctors and patients were faced with the evidence that in the U.S., many women with breast cancer are being massively overtreated. Thanks to advances in genomic testing and deeper insights into the biology of different kinds of breast cancer, doctors are learning that the one-size-fits-all approach isn’t working. They’re also learning that every woman brings with her a unique profile of biological risk–as well as a unique appetite for risk. That means that while some women require urgent and aggressive treatment, there are many who can slow down and take a more sparing approach.
Now those at the vanguard of breast-cancer treatment are calling for a major shift in the way doctors treat–and talk about–the disease, from the first few millimeters of suspicious-looking cells in milk ducts to the invasive masses found outside of them. That’s making the tough conversations between a woman and her cancer doctor ever harder, but it also stands to make them more fruitful.
Because as good as we have gotten at finding breast cancer–and we’ve gotten very good–all this new data suggests there may be better ways to treat some breast cancers, particularly those at the early stages. Evidence is mounting that aggressive treatments, designed in earnest to save women’s lives, can have unforeseen and sometimes devastating consequences.
Call it collateral damage. It’s the multiple follow-up surgeries after a mastectomy and the subsequent infections; the radiation that doesn’t always improve survival and the cancer risk that can come with too much of it; the sometimes unnecessary chemotherapy and its life-sapping side effects. For some in the field, that collateral damage is getting harder and harder to justify.
Now a small but influential chorus of leaders is calling for a radical–measured but still radical–shift in the way doctors are approaching the disease. “As a surgeon, to say we shouldn’t be operating as much as we are is a very big deal,” says Dr. Mehra Golshan, a surgical oncologist at the Dana-Farber/Brigham and Women’s Cancer Center. “And that’s what I’m saying.”
Medicine is slow to move, and that’s especially true with breast cancer. Doctors are up against not only new data but also an accumulated mass of public opinion seeded by policymakers and advocacy groups with strong positions on how best to screen for and treat breast cancer. These measures were put into place for good reason, of course–because experts thought they would save lives. But they didn’t–or at least not as many as anticipated.
This year more than 40,000 women in the U.S. will die of breast cancer. That’s the same, give or take, as last year, and the 13 years before that. At the same time, fear of the disease has led many to overestimate the risk it poses. The chance that a woman will die of breast cancer is 3%, and that’s been the case since the early 2000s, when a blockbuster report demonstrated that hormone-replacement therapy (HRT), which women took during menopause to help with side effects, could unwittingly fuel the development of breast cancer. Once HRT fell out of vogue, the number of deaths dropped, and it’s remained largely unchanged since.
“I hear people say that medicine is so important that we can’t be too quick to change, and I would say the opposite: Because it’s so important, we need to innovate,” says Dr. Laura Esserman, a surgeon and the director of the Carol Franc Buck Breast Care Center at UCSF. “If we were doing so well and no one was dying, I would agree we don’t need to change. But patients don’t like the treatment options, and physicians don’t like the outcomes.”
Esserman and Hwang, now chief of breast surgery at Duke University and Duke Cancer Institute in North Carolina, are leading a number of studies that they hope will fill in some of the knowledge gaps that make change such an uphill battle. DCIS now accounts for about 20% to 25% of breast cancers diagnosed through screening. Before routine screening, which went wide in the mid-1980s, it was 3%.
“Our two greatest challenges,” says Dr. Eric Winer, director of breast oncology at Dana-Farber, “are figuring out better treatments for the 40,000 women who die of breast cancer every year, and at same time, figure out who, on the other end of the spectrum, is getting exposed to needless toxicity.”
If only doctors could agree on how to do that. Everyone says surgeons and radiologists need to know more about how to do less. And doctors don’t want to be responsible for the patient who isn’t treated aggressively and dies on their watch. That’s where the two camps split: motivated by the same thing, some in the field are working to find even more proof the disease can be treated responsibly another way, while others say it’s just too risky to pivot without proof.
It used to be accepted that tumors grow at a steady clip. Once they get big enough, they spread, and when they spread, you’re in trouble. That was the reasoning behind the “early detection saves lives” thinking and it did, in fact, help save many lives. But now experts know that many breast cancers are, in the apt medical term, indolent–slow-growing tumors that may never cause symptoms, let alone hasten a woman’s death. They also know there are a small number of breast cancers that spread very quickly, sometimes even before they are detected. They’re working to figure out which ones are which–and what to do in the meantime.
“Many doctors still say that any breast cancer is a failure of a patient to get a mammogram or failure of a doctor to detect it,” says Dr. Otis Brawley, chief medical officer of the American Cancer Society. “If you look at the science, that is so clearly not the case.”
Indeed, the 2009 guideline that most women start screening at 50, which caused a national uproar, is still controversial today–despite the fact that when mammograms went wide, the reduction in deaths didn’t match what experts say was expected.
Screening presents doctors and patients with a modern conundrum. If you have the technology to detect something, you are without a doubt going to find more of it. One doctor puts it this way: In a beachside tragedy, a shark attacks a swimmer and the swimmer dies. In the past, that would have been seen, perhaps, as a freak accident. But today we have flying robots with cameras and sensors that can patrol the waters. When we discover the area is teeming with creatures that may also have an appetite for humans, though we can’t be sure, what do we do? Do we close the beach?
No one is suggesting that women stop getting mammograms. But experts think it’s important to be honest that it’s an imperfect technology. “Mammograms are here to stay,” says Hwang, who has about 20 patients at any given time who have chosen to do active surveillance instead of surgery and the treatments that follow it. “It’s not the ‘finding more’ that we need to work on. It’s what are we going to do with the more that we find?”
That’s what’s keeping cancer doctors up at night. That, and the growing concern that with all breast cancers being treated aggressively, some patients are getting hurt. With breast cancer, the burden of proof for not doing something is greater than it is for acting. And when doctors deviate from what’s called the standard of care, they can face malpractice lawsuits.
Some experts note that with other diseases, insurers would be the bad cops, denying payment for treatments that may be unnecessary. But with breast cancer, otherwise hard-nosed insurers will often pay for many of the approved therapies as long as they’re in line with published guidelines. Since the guidelines for breast cancer tend to err on the side of caution, it means that regardless of the stage of her disease or her prognosis, a woman is likely to have insurance that will cover both mastectomy and reconstruction.
“There is no check on what is a reasonable treatment for an anticipated outcome,” says Hwang. “If we are going to accept that everyone, even those who have a 1% chance of mortality improvement, can get a treatment, that is not biologically a good way to approach the problem. It’s also just incredibly expensive.”
The increase in women opting for a contralateral prophylactic mastectomy–which doesn’t improve survival for most patients–worries a number of surgeons because it isn’t clinically indicated for most of the patients who get one. (One exception is women with rare BRCA1 and 2 mutations, which greatly increase a woman’s chance of developing breast and ovarian cancer. That’s why Angelina Jolie famously had the procedure and why doctors continue to recommend the surgery in such cases.)
“We are talking about major surgery,” says Hwang. “It can involve revisions, prolonged pain, hernias. I think the best way to understand it is that it may require surgeries for the rest of your life. Some small, some major. But it’s not like you’re done and you can forget about it. It just doesn’t work that way.”
There are psychological effects for some women, though not all. Some women say they struggle with feelings around femininity and sexuality after surgery. Some who have had nipple-sparing mastectomies–a reconstruction that preserves the woman’s own nipples–wonder when the sensation will return. (The answer is often, never.) They’re also at increased risk of depression and all that can come with it.
“It’s not my job to say that their decision is wrong,” says the breast surgeon Golshan, who worries that patients are not adequately cautioned about–or at least not fully aware of–the potential risks. “Women may see end-result pictures, and it looks wonderful. But the vast majority of reconstruction requires multiple steps of revision.”
Cancer has a language problem–not just in the way we speak about it, as a war that drafts soldiers who never signed up for it, who do battle and win, or do battle and lose. There’s also the problem of the word itself. A 57-year-old woman with low-grade DCIS that will almost certainly never become invasive hears the same word as the 34-year-old woman who has metastatic malignancies that will kill her. That’s confusing to patients conditioned to treat every cancer diagnosis as an emergency, in a world that still reacts to cancer as though it’s the beginning of the end and in a culture where we don’t talk about death until we have to.
“We think that word means the most aggressive thing,” says Basila, recalling the shock when she first learned she had DCIS. “I’m not saying doctors should sugarcoat it. But we have to have the perspective that we can sometimes afford to not see it as a death sentence, de facto.” That is hard to do in an hour, let alone in a 10-minute appointment.
Dr. Steven J. Katz, a professor at the University of Michigan who studies patient and physician decisionmaking, points out that the vast majority of women feel healthy when they’re diagnosed. And with most women diagnosed from ages 55 to 64, their own mortality is not, for good reason, top of mind. But now, inevitably, it will come up. This is not an easy conversation to have. “They’re well and told they’re sick,” says Katz. “And then they are told they will have to get really sick to get well.”
Talk to women about what that’s like and you’ll hear things like: “I literally went into shock.” “I was blindsided.” “I got sort of dizzy.” You may also hear: “I don’t really remember what we spoke about, but I remember it said 4:01 on the clock.”
That’s a difficult position from which to make a life-changing decision, and most women make a decision within weeks of diagnosis, says Katz. It’s not the right way to do things, says UCSF’s Esserman. “The time has come to ask, What happens if I do nothing right away.” The “right away” part of the question is important. “Let’s not make it a panic. There is no evidence to support getting surgery in two weeks.”
Katz’s research has demonstrated that there’s a natural instinct in patients, when faced with the C word, to outsource the decision to their doctors. That’s why who your doctor is, what she tells you and how she tells it to you matter enormously. Because for many women, the strong inclination is to do whatever can be done–and as quickly as possible–to begin to feel like their normal selves again. That can get tricky when a patient’s attempt to get back to normal as quickly as possible is at odds with the science of how best to do that.
Some new tools are pushing the field forward, though they’re not perfect. A genomic test called Oncotype DX, for instance, can help doctors determine whether or not some patients will respond to chemo. It was part of a landmark study in the New England Journal of Medicine in September showing that some women with early-stage disease could be treated with hormone therapy alone.
Another gene test, the Oncotype DX DCIS, can help indicate who is at low, intermediate and high risk of recurrence of DCIS, helping inform whether a woman needs radiation therapy following a lumpectomy. And while there aren’t yet diagnostics to say precisely who is a good candidate for active surveillance, the doctors who partner with their patients on such a plan say they do so prudently.
Many in the field still don’t think there’s enough evidence to support active surveillance for anyone, because the method hasn’t been tested in a randomized prospective trial–the gold standard for the widespread adoption of a medical treatment. That’s something Hwang and Esserman are hoping to address in the U.S.
Hwang was awarded $1.8 million in September to perform a retrospective study comparing active surveillance with standard care, and she’s hoping she’ll soon have the green light to do a prospective study looking at the same thing.
Esserman is creating a DCIS registry at the five University of California medical centers. Women diagnosed with DCIS at any of the facilities will be offered options–including active surveillance–and be tracked over time. The hope: that the data will refine doctors’ understanding of who, with DCIS, will go on to develop invasive breast cancers and who will not.
Esserman has also launched something called the WISDOM study, which will randomize women to either annual screening or a more personalized screening approach. “We’ll learn over time what works,” says Esserman. “How wonderful if we can learn how to do less for women.”
In the U.K., meanwhile, where bilateral prophylactic mastectomies are rarely performed unless a patient has a gene defect or is at a very high risk of invasive breast cancer, a first-of-its-kind investigation is under way. Called LORIS, it’s a 10-year randomized controlled prospective study, funded by the U.K.’s National Institute for Health Research, that will include 900 women. Half will get the standard care, and half will be actively monitored.
“My personal view is that enough time has been spent arguing about screening, and we now should be addressing the issue through well-run clinical trials that are long overdue,” says Dr. Adele Francis, a breast surgeon at University Hospital Birmingham and the lead on the LORIS study. Some experts doubt that such a trial would fly in the U.S., given how risk-averse the field historically has been.
There’s another important piece of the puzzle: the women with the diagnosis. “Change in medicine comes from patients,” says Esserman. “My patients don’t like the options we have. So I say, Get the facts. Find someone who will go through those options with you.”
For some women, like Basila, that’s already happened. And just as some women choose to take a “get it out of me” approach, there are some–not many, but some–for whom the opposite is appropriate. As with all the hardest decisions we have to make about our health, it comes down to the impossible calculus of what level of uncertainty can I live with?
“What I am doing is not foolproof,” says Basila. “I know that. I also know life is finite and that death is unavoidable. For me it came down to the quality of the life I want to live. I don’t want to be tired and bitchy if I can avoid it. And come what may, I think we really hurt ourselves by trying to just not be dead.”
Correction: This piece has been updated to reflect the proper title of the Dana Farber/Brigham and Women’s Cancer Center. An earlier version of this story also misstated which patients would be involved in the WISDOM study.
This appears in the October 12, 2015 issue of TIME.