Sandie Walters’ breast cancer was diagnosed in 2007 during a routine screening mammogram, and soon after, the 58-year-old Grand Rapids, Mich., woman was sitting in a surgeon’s office. His recommendation: a mastectomy, preferably immediately.
She says her doctor even seemed reluctant to postpone the surgery until after she and her husband had returned from their imminent two-week summer vacation. “He said, ‘It’s probably OK, but I can’t officially say that it would be OK.’ Well, if you think that’s not scary—that’s scary.”
It’s a story that sounds unsettlingly familiar to patients who undergo a routine test only to find themselves thrust into the frightening position of making a life-changing decision about cancer treatment. However, Walters’ story comes with a notable twist—one that’s affecting an increasing number of women with breast cancer. Her diagnosis was ductal carcinoma in situ (DCIS), also referred to as stage 0 cancer, a nonmalignant but potentially risky condition that’s creating stress and controversy for patients and physicians alike.
That news launched Walters on a seven-year quest. She first steeped herself in studies and second opinions before choosing more limited treatment followed by ongoing screening. It’s not an approach that she regrets, despite receiving unsettling test results in June. “When I think back on it, I don’t think I would have done anything differently,” says Walters, shortly after an imaging scan identified a stage 2 tumor in her healthy breast.
Time to Decide
The abnormal cells of DCIS are described as stage 0 because they’re confined to the milk ducts of the breast, where they could remain, perhaps forever, without causing additional problems. But DCIS also is considered a risk factor for invasive breast cancer, which occurs when those cells spread beyond the ducts to elsewhere in the breast and potentially, albeit rarely, much farther. “The problem is that it’s difficult to pick out the bad actors in terms of cancer,” says Ann Partridge, a medical oncologist at Boston’s Dana-Farber Cancer Institute.
The result is that some women decide to use the surgical equivalent of a sledgehammer on a not-quite-cancerous lesion. Getting a double mastectomy for a small area of DCIS is typically considered an excessive measure by clinicians, Partridge says. The comedian Wanda Sykes took this surgical route after her DCIS diagnosis in 2011, telling viewers of the “Ellen” show that she preferred to slash her worry and recurrence risk to near zero. Meanwhile, women like Walters pursue second opinions as they weigh not only the type of surgery, but whether to later undergo radiation treatments or take tamoxifen, a hormonal agent that blocks the cancer-promoting effects of estrogen. At the opposite end of the spectrum, still a small group, are those women who opt for “active surveillance,” which includes aggressive screening, sometimes combined with hormonal medications, instead of surgery.
It’s a valid approach for some women with DCIS, says Laura Esserman, a breast surgeon at the University of California, San Francisco, who has spoken repeatedly about her overtreatment concerns. “I do think there is a large majority of DCIS [cases] that are detected today that are low or no risk,” she says. “One size does not fit all. And DCIS is not one condition.”
While cancer physicians might differ about the degree of overtreatment, they do coalesce around one point: Any diagnosis that includes the word “carcinoma” can trigger understandable palpitations. But with DCIS, patients have plenty of time to research and consider options, says Thomas Julian, a breast surgeon at Allegheny General Hospital in Pittsburgh.
“First of all, very few people die from DCIS,” Julian says. So he tells patients to take the time to work through it. “There’s not a biological rush” that demands treatment within a few weeks, he adds.
[Another Lesion: LCIS]
More Harm Than Good
The rapid increase in DCIS over the past several decades has been attributed to increasing numbers of women who undergo routine screening mammography, as the noninvasive breast cancer seldom can be felt as a lump and usually detected on mammographic screening as calcium specs (microcalcifications). Today, roughly 25 percent of breast cancer diagnoses are DCIS, whereas prior to 1980 it was rarely detected.
Despite the unsettling name, the survival rates are quite good. One analysis, which examined long-term results from two major studies, found that the breast cancer-related mortality rate within 15 years was 3.1 percent among women who received only a lumpectomy. It was even lower, but not statistically different (2.3 percent) for women who completed radiation and tamoxifen after surgery, according to the findings published in 2011 in the Journal of the National Cancer Institute. “Yes, we are overtreating many patients,” says Irene Wapnir, a study author and chief of breast surgery at Stanford School of Medicine in Stanford, Calif. “But on the other hand, lumpectomy, radiation and tamoxifen achieve excellent long-term results.”
Still, these medical interventions are not without personal costs, including potential side effects, says Shelley Hwang, chief of breast surgery at Duke Cancer Institute in Durham, N.C. She worries that some doctors don’t take time to explain to patients the relative risks and benefits of treatment. “Nobody ‘needs’ radiation,” she says, yet adds that it does reduce recurrence risk.
However, radiation does not reduce metastasis or death rates—those outcomes are very rare with DCIS, and about the same with or without radiation and hormone therapy. Therefore, the benefits of radiation treatment must be balanced against the risks, which include inflammation and redness of the skin, fatigue, and rarely, secondary cancers and cardiac issues.
One difficulty in advising patients, Hwang says, is that relatively little is understood about the natural course of DCIS and how frequently it progresses to invasive cancer if left alone and closely monitored. “As long as we’ve known about DCIS, we’ve never not treated it,” she says, adding it’s still unclear what would happen if it was routinely left untreated.
Rethinking Aggressive Treatment
Initially, mastectomy was the standard treatment for DCIS, Julian says. But research showed that lumpectomy combined with radiation provided similar benefits for women, particularly when the area of DCIS was small, he says. And DCIS that’s diagnosed by mammography tends to be small—no more than a few centimeters in size. Moreover, if the DCIS is confined to one region of the breast and not scattered across several regions—the technical term is quadrants—the patient would be a good candidate for a lumpectomy, he says. (The size of a woman’s breast also figures into whether lumpectomy is an option.)
The advantage of lumpectomy, Julian says, is a shorter recovery time than with a mastectomy, with likely less pain and fewer surgical side effects. Moreover, patients retain most of their breast, and thus avoid a reconstruction procedure, he says.
Still, both Julian and Wapnir say, despite their best counsel, some women with DCIS insist on having a single or even a double mastectomy. These women “feel that they’ve kind of grazed a big monster and that if they are very aggressive, they won’t ever have to face this again,” Wapnir says. “For me, it’s been an astonishing backswing of the pendulum. It’s becoming harder to talk them into lumpectomies.” However, some women may prefer not having to be monitored and subject to the fear of recurrence even if the death risk is minimal.
Far from leaping to a mastectomy, Walters decided to explore her options, meeting with a second surgeon who agreed to perform a lumpectomy instead. In December 2007, her surgeon removed three areas of tissue from her left breast, with the largest measuring 7 centimeters by 5.5 centimeters by 2 centimeters. Then Walters reached her next decision-making crossroad: whether to undergo radiation.
One frequently cited analysis, which looked at four DCIS studies, found that undergoing radiation after a lumpectomy cut a woman’s 10-year chance of recurrence by 15.2 percent. Those recurrences were roughly split, with half involving another DCIS and the rest an invasive cancer, according to the analysis, published in 2010 in the Journal of the National Cancer Institute Monographs.
Also following surgery, including mastectomy, women are asked to make another choice: whether to take hormone therapy if the DCIS is estrogen-receptor (ER) positive (three-fourths of DCIS lesions are ER-positive, according to one pathology analysis) with a goal of reducing the risk of later developing invasive cancer in either breast.
In Wapnir’s 2011 analysis, the 15-year risk of an invasive breast cancer emerging was 8.5 percent when women took tamoxifen, an estrogen-receptor blocker, following a lumpectomy and radiation. If they skipped the hormone treatment, it was 10 percent. (Among those women who chose lumpectomy alone, 19.4 percent developed an invasive cancer.)
But the analysis didn’t find any statistically significant survival benefit to adding either radiation or tamoxifen. This is because a vast majority of recurrences are local—that is, they’re in the breast and are treatable with surgery—so their impact on mortality is miniscule, if anything.
Tamoxifen also increases the risk of some uncommon, but potentially serious side effects, including stroke and blood clots. Some women also experience symptoms that adversely affect their quality of life. One study published last year found that 15 percent of women who underwent hormone therapy, including tamoxifen, stopped the drug early because of intolerable side effects, such as hot flashes and blood clots.
As each woman plots her own path, a key part of this calculation is determining how high her risk of recurrence is in the first place.
Walters conducted extensive research in that regard, sometimes traveling for consultations and follow-up tests, as well as sending her surgical slides to a renowned pathologist. That physician used a predictive tool, called the Van Nuys Prognostic Index, to estimate that Walters’ recurrence chance following surgery was 4 percent. Thus, adding radiation would reduce her chance of recurrence to 2 percent.
Walters ultimately decided to pass on the radiation. She received regular imaging scans without incident, until that tumor was discovered in her healthy breast. The pathologist whom Walters consulted for a second opinion, she says, flatly stated that the cancer was not related to her prior DCIS. “The only thing the DCIS did is put me at higher risk at both breasts, not just the DCIS breast,” she says.
Radiating the DCIS in the left breast wouldn’t have prevented cancer from developing in the right, Walters points out. But what if she had taken tamoxifen? Her recurrence risk was already low to start with, she responds, adding: “You don’t know what the side effects of tamoxifen are going to be for you until you take it and try it. Women have very different reactions.”
Hwang strives to walk her patients through a similar personalized calculation, based on the pathology of the DCIS itself, the woman’s age, life circumstances and risk-taking mind-set. That’s the bottom line, Hwang says: “How much of a risk are you comfortable living with? And how much do you feel like you have to do to get that [recurrence] number as close to zero as possible, including mastectomy?”
The Van Nuys index, which looks at factors such as age, DCIS pathology and margins after surgery, is one of several predictive tools that has been developed, although there’s still no consensus on the best approach, according to the National Cancer Institute.
One tool, Oncotype DX, aims to take risk analysis a step further by incorporating gene markers. The test analyzes a gene panel to calculate a DCIS score. In a study published last year in the Journal of the National Cancer Institute, researchers found that the DCIS score in patients who did not receive radiation was significantly associated with the 10-year risk of developing a recurrence, either of DCIS or an invasive cancer. Patients with a low score had a 10.6 percent chance of recurrence within the next decade versus about 26 percent for those with an intermediate or high score.
Lawrence Solin, the study’s principal investigator, says he uses the score to assist women who are wrestling with their postsurgical options. “It’s a way to stratify patients,” he says. “It’s important to recognize that none of these are perfect predictors. Even a low-risk score doesn’t give her a zero risk of recurrence.”
Solin, who chairs the radiation oncology department at Einstein Healthcare Network in Philadelphia, acknowledges that postsurgical radiation hasn’t been shown to increase a patient’s long-term survival. Still, the benefit of avoiding recurrences shouldn’t be discounted, he says. “A tumor that comes back, even if it’s local and can be treated with surgery, carries severe costs to the patients,” he says. “There’s tremendous anxiety and an emotional component.”
Opting for Active Surveillance
But patients also should be filled in on the broader picture, Esserman and Hwang say. Even if DCIS spreads beyond the milk ducts one day and becomes invasive cancer, close screening should catch it early, they say. The rate of five-year survival with localized breast cancer is 98.5 percent, according to the National Cancer Institute. “Are you at risk for something that’s going to be lethal tomorrow?” Esserman asks. “No.”
So, Esserman and Hwang ask, if a woman’s lesion is low-grade and hormone-positive, why not hit the pause button on surgery? One option that’s now being explored is to offer such women a hormone treatment as a potential prevention measure. (Esserman uses the analogy of prescribing a statin drug to a patient with high cholesterol.)
Hwang is leading a multisite study, which is recruiting participants, to investigate the impact on DCIS of taking the hormone therapy letrozole before undergoing surgery. After three months of hormone therapy, participants will undergo a magnetic resonance imaging (MRI) scan. If the DCIS hasn’t progressed, the women will continue taking the letrozole for another three months, followed by a second MRI and then surgery.
The hope is that women on the study will benefit personally if their DCIS shrinks enough to qualify them for a lumpectomy rather than a mastectomy, Hwang says. “But I think the long-term goal also is very important, which is to identify a group of women where the DCIS might go away altogether with hormonal therapy alone,” she says. “That would really help us to get surgery out of the mix for these very good-prognosis DCIS.”
Some women already are skipping surgery entirely. Mary Jane Lapinski took tamoxifen for three months before surgery in 2003 as part of another study involving Hwang. Her DCIS diminished enough that she could have chosen a lumpectomy.
But Lapinski decided to continue taking the tamoxifen, bypassing surgery against Hwang’s recommendation. After five years of taking tamoxifen, Lapinski switched to another hormone drug, raloxifene. The 59-year-old, who lives near Washington, D.C., doesn’t consider herself “some kind of daredevil.” She continues receiving regular MRIs and mammograms, and, as Walters did for years, hopes that her brush with near-cancer advances no further.
“If [invasive cancer] ever did develop, I would do what I have to do,” Lapinski says. “But when someone is telling you that you have noninvasive cancer, and then they say, ‘Oh, by the way, we’re going to do a mastectomy,’ that makes no sense to me at all.”
As Walters weighs her options, she distracts herself with time on the tennis court, saying that her energy and optimism have not flagged. “There is just this one stupid problem that I can’t seem to shake,” she quips.
Once Walters sorts through her treatment options, she plans to update her blog, which she has used to document her search for answers, saying that it’s only right to share this latest installment in her DCIS experience. “That’s one reason women choose more drastic treatments,” she says, “because they don’t want to deal with this ever again.”
Editor’s Note: Read Sandie Walters’ blog at dciswithoutrads.com.
> Patients with DCIS have time to explore treatment options and weigh the risk and benefits.
> Patients can reduce their recurrence risk but never eliminate it.