Earlier this year, doctors found a lump in my mother's breast. The call to deliver the news marked the first of many frightening conversations we would have over the next few months as she went through test after test—each one bringing her closer to knowing her fate.
There were mammograms, two MRIs, and a biopsy—a painful procedure in which doctors remove a piece of tissue and check it for cancer. After each stage I would ask my 57-year-old mom, “Do you have cancer?” And she would respond, “I don’t know.”
I wanted answers, but none of the specialists used the word "cancer." They also didn’t not use the word "cancer." For a long time, we had no idea what was going on. Then the MRI showed four lumps, and the biopsy came back abnormal. She was told she need surgery and underwent a lumpectomy, in which portions of her breast were sliced away.
My mother and I were still reeling from her ordeal when The New York Times published a feature last month that sent us into a vortex of doubt and anger. The story covered a study published in the journal JAMA Oncology that looked at how effective it was to treat cases of “pre-breast cancer,” and it seemed to suggest that invasive procedures like my mom’s—as well as more dramatic ones, such as mastectomies—were potentially unnecessary.
Within a day, many other media outlets followed the Times’ lead and covered the study, echoing the message that doctors may be over-treating these possibly-cancer-but-maybe-not diagnoses. The prevailing message was that, sometimes, the best treatment was little or no treatment. Had the restless nights, constant worry—and my mom's surgery—all been for nothing?
After taking a close look at the study's findings, however, I found myself with more questions than answers, and I suspected I wasn’t the only reader who was confused. So I reached out to the study’s author and other oncologists for some clarity, and eventually, I was able to break down the practical basics of how experts currently recommend handling the type of “pre-breast cancer” diagnosis discussed in the study. Here’s what you should know.
The study featured in The Times looked specifically at a condition known as ductal carcinoma in situ (DCIS), or what some call “Stage 0” breast cancer. The medical community does not agree on whether DCIS is cancer, precancer, a precursor to cancer, or a risk factor for cancer, but they agree that the term “Stage 0” works. The goal of the study was to determine the effectiveness of various medical and surgical treatments—an important issue for the 60,000 women in the United States who are diagnosed with the condition every year.
One of the study’s key revelations was that 3.3% of patients who received varying treatments for DCIS—surgery, radiation, hormones, or a combination—died within 20 years of the diagnosis, while close to 97% survived. But the research didn’t look at participants who did not receive treatment, so it’s difficult to compare the effects of treating versus not treating the condition. The Times article, meanwhile, stressed that this mortality rate was on par with the average woman’s chance of dying of breast cancer, suggesting treatment might be ineffective.
In its coverage, The Times quotes the study’s lead author, Steven Narod, a researcher at Women’s College Research Institute in Toronto, as saying that after cells are biopsied, “I think the best way to treat DCIS is to do nothing.”
The Times followed the original article with a “Readers React” feature, in which they repeated Narod's quote on top of regrets readers shared after learning they may have had unnecessary treatments. “I railed against the idea of there being a ‘Stage 0’ cancer,” wrote a reader named Judith from Asheville, North Carolina. “It still infuriates me that I went through surgery (lumpectomy) and radiation treatment for what I believed at the time was possibly a ‘blip’ rather than a serious cancer … Waiting and watching is a good idea and what I wish I had done.”
Within a few days of its publication, the Times changed the original article’s headline from Early-Stage Breast Condition May Not Require Cancer Treatment to Doubt Is Raised Over Value of Surgery for Breast Lesion at Earliest Stage. The plot thickened when I spoke with Narod himself, who flat-out denied advising that patients with DCIS skip treatment.
I reached out to the Times journalist who wrote the story, Gina Kolata, and she explained that she does not write headlines for her stories, but the second headline "seems a lot more accurate.” She also clarified that Narod recommended skipping treatment after problematic lumps are removed—not skipping treatment entirely. But these subtleties got lost in the context.
While the flurry of coverage offered important insights on an incredibly confusing topic, based on my reporting, the takeaway from the study is much more complex than simply "do nothing”—and watching and waiting is almost never the best medicine when breast cancer is detected at its earliest stages.
If the term “precancer”confuses you, you're not alone. It confused my mother and me during her ordeal, and oncologists say it confuses patients regularly. This confusion may explain why the Times piece sparked so much anxiety and angst among readers.
In the case of DCIS, which some doctors agree is a form of precancer, a woman is diagnosed with the condition when abnormal cells that look identical to cancer cells are found inside her milk ducts but have not moved from their original position—they have not "invaded" the rest of the breast or body.
“If you sucked out some of those little cells and gave them to pathologists, they might say, ‘That’s cancer,’” said Kimberly Van Zee, a surgical oncologist at Memorial Sloan Kettering Cancer Center. Out of context, they look like cancer—but in context, they are precancerous because they haven’t destroyed the duct wall yet. They have not yet spread, and there’s no way to tell if they ever will.
“When I have a patient with DCIS, I spend a lot longer explaining everything than I do with a patient [who we know has invasive cancer],” said Van Zee, because “we have to start talking about, ‘Is it cancer?’”
For some women with DCIS, there is a good chance it will never turn into invasive cancer. “In the absence of treatment, my belief is that [the cancer cells] would go away on their own”—in some cases—Narod told me. The catch is, there’s no way to know in which cases they will go away on their own and which they won’t.
For other women, especially younger women and black women, DCIS could absolutely turn into invasive cancer. Women under 35 are at greater risk because they will presumably live with the cancerous cells for longer. And black women have a 7% risk of dying from breast cancer compared to a roughly 3% risk for white, non-Hispanic women, due to reasons ranging from genetic to socioeconomic.
“There is some pretty good evidence that [the cancer] will invade, given enough time,” said Van Zee. Over several decades, what was once DCIS—or cancerous cells contained within a woman’s milk ducts—could invade the body and turn into life-threatening cancer.
Over the course of 10 to 15 years, roughly 40 to 50 percent of DCIS cases will progress into invasive cancer if not treated, Van Zee told me, citing a 2014 study published in the Journal of the National Cancer Institute. Once the cancer progresses from DCIS to invasive, a patient must be treated to keep the cancer from spreading and threatening her life.
Doctors do have the ability to evaluate the risk of DCIS recurring or invasive cancer occurring in the five years after initial treatment, said Harold Burstein, an oncologist at the Dana-Farber Cancer Institute in Boston. So women can decide with their doctor which treatments are right for their situation—but getting no treatment is not a good idea. "We know that treatment works for DCIS," Burstein said. "There's no question you can help prevent cancer from arising.”
None of the options for treating DCIS are particularly fun—a reality that can be hard to swallow if there’s a chance what you have is a “blip,” as Judith from North Carolina put it. Options include surgery—a lumpectomy or mastectomy of one or both breasts—radiation therapy, and hormonal drugs such as Tamoxifen, which interferes with estrogen’s ability to stimulate the growth of breast cancer cells. Treatment can involve one or several of these things combined.
But again, treatment of some kind is still recommended. “What I tell people is that the whole logic of treating DCIS is to prevent invasive cancer,” said Van Zee. Narod, too, stressed that even if 90 percent of DCIS cases were (hypothetically) to go away on their own, given what we currently know, he would still treat all cases to prevent worse outcomes.
The study does highlight that overtreatment may also be happening, and cautions against leaning on overly invasive solutions. A woman with a DCIS diagnosis probably doesn't need a double mastectomy, which some women request. "There are a lot of folks who just cannot accept that there’s something we call cancer that doesn’t necessarily need to be treated [aggressively]," said Otis Brawley, chief medical officer at the American Cancer Society.
While aggressive treatment is not always necessary for DCIS, Brawley told me, treatment of some kind still is. "I cannot condone just watching and waiting at this juncture or not treating it,” he told me. As science discovers better methods of determining which cases will progress to become invasive cancer and which won’t, doctors will be better equipped to advise patients on whether or not treatment is necessary. As of today, however, that technology does not exist.
As for my mother, after undergoing a lumpectomy, doctors determined she did not have cancer, but she did have atypia, which means her cells lined up abnormally, which can be a precursor to DCIS. A possible pre-pre-cancer, if you will.
Am I glad she had surgery, knowing what I know now? Hell yes. Would I advise her to “do nothing” in retrospect? Hell no.
Taryn Hillin is Fusion's love and sex writer, with a large focus on the science of relationships. She also loves dogs, Bourbon barrel-aged beers and popcorn — not necessarily in that order.