Provide names of other journalists involved.
None
List date(s) this work was published or aired.
Sep-11
Provide a brief synopsis of the story or stories, including any significant findings.
The cancer of the headline– “The Breast Cancer You May Not Need to Treat”– is ductal carcinoma in situ (DCIS), and the story reports on the judgment of a growing number of researchers and physicians that many DCIS lesions should not be treated. Some even recommend that it not be called cancer at all. Underlying these proposals is a changing view of breast cancer generally, a view that not all cancers are the same disease, not all cancers are fatal, many cancers grow so slowly they are not dangerous, and, yes, some cancers go away without treatment. It’s a view that suggests mammography screening may not be as beneficial as once believed and that the prevailing ideas about treatment– find the cancer early, cut it and adjacent tissue out, zap any cells that escaped the knife with powerful chemicals– may be excessive. It’s a view that has been controversial enough to generate a strenuous backlash against recommendations issued in 2009 by the Preventive Services Task Force, an independent government funded panel, that women between 40 and 49 should not get routine screening mammograms and women between 50 and 73 be screened every two years rather than every year. The possibility of over-diagnosis of DCIS, the panel concluded, was one of the potential harms associated with mammography screening. Accusations of rationing women’s access to health care forced the Task Force to backpedal on its recommendations. After talking to many patients, it became clear that most weren’t aware that a DCIS diagnosis was extremely rare before the screening/mammogram era. Less than 1 percent of breast cancers were DCIS before 1980; now, it constitutes more than 25 percent. This translates into about 60,000 new cases of DCIS a year in the United States, almost all of which are treated as aggressively as invasive (spreading) cancers. Nor were patients aware that the DCIS cells trapped in the milk ducts, the so-called precancerous cells, would have to undergo a significant change before they could escape into the surrounding tissue and become invasive breast cancer– a change that may never occur. Nor had they been told that the survival rate was almost 100 percent whether they opted for a lumpectomy, lumpectomy with radiation, or mastectomy. By looking at the singular diagnosis of DCIS, this story set out to answer some basic questions: Is early detection, i.e. mammography screening, the key to saving the lives of women with breast cancer? Or, are women with a benign disease receiving surgery and radiation, with their attendant side effects, for a precancerous condition that is unlikely to harm them? And it probed some very personal questions for the women who receive this diagnosis: What does precancer mean? What are my chances for survival? The answers lay in the latest research into the biochemistry and genetics of cancer, which is being applied to the practicalities of medical treatments: new drugs that attack specific biochemical pathways, genetic markers that differentiate one cancer cell from another and guide specific treatments, a clearer understanding of the process of carcinogenesis. (An accompanying story on a new approach to clinical trials appeared on MORE’s website.) Our goal was to present the information in a way that readers faced with this diagnosis could make informed decisions about treatment, and more broadly, in a way that could help citizens evaluate societal arguments over the limits of treatment for any illness.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I studied the original research papers published in scientific journals and requested some papers that were not yet published from the authors. I mined the data bases of the American Cancer Society and the National Cancer Institute, especially statistics from the Surveillance, Epidemiology and End Results (SEER) surveys provided through NCI, and the CDC’s breast cancer trends. But the real sources for this story were the people.
Explain types of human sources used.
Over the course of almost a year, I interviewed researchers at the forefront of the movement to abandon the one-size-fits-all treatment protocol for breast cancer. I interviewed researchers who are recommending that treatment options include active surveillance, a watch-and-wait strategy that is already used for some low-risk prostate-cancer patients but is almost never employed for DCIS. I also interviewed researchers who see DCIS as a definite precursor to invasive breast cancer and believe that finding and treating these lesions early is saving many lives. I spoke with oncologists specializing in breast cancer, most of whom were conflicted about the more aggressive treatments for DCIS. But the standard of care is to lay out the probabilities of recurrence for the basic breast cancer treatment options and let the patient decide. And I interviewed the oncologists who are beginning to include active surveillance in their list of possible treatments. The trickiest part of my reporting was talking to patients. Women who are diagnosed with DCIS are often overwhelmed by the C-word and many believe the treatment they got, whatever the treatment, saved their lives. Any data to the contrary does not compute, which is why the researchers who advocate active surveillance want to take “cancer” out of the diagnosis and to view DCIS as you would any other risk factor, such as family history. Every DCIS patient is a cancer survivor and will live with that niggling worry for the rest of her life. Her first-degree female relatives will have their risk profiles raised. If we were living in a pre-1980 world, it’s entirely possible many of these women could have lived out their lives without ever having a brush with breast cancer.
Results:
One of the scientists I interviewed warned me to be careful; he’d gotten death threats for suggesting women were being over-diagnosed and overtreated for breast cancer. Yet, MORE, a magazine that reaches mainstream, upscale women, was eager to publish the story. Getting this kind of information into venues that reach a general audience is an important result, and MORE deserves a lot of credit for taking it on. After all, it’s the patient, according to many of the doctors I interviewed, who is often the most strenuous advocate for what may be much too aggressive treatments.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No
Advice to other journalists planning a similar story or project.
It may take a while to find a publication willing to take on a controversial story, give you the space to tell it adequately and the time to do in-depth reporting, but if you stick with it, you can find that publication.