Why don't journalists pay more attention to DCIS?

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The LA Times Booster Shots Blog was one of the handful of news organizations that wrote anything about the Journal of the National Cancer Institute articles this week on DCIS or ductal carcinoma in situ.

The Times wrote:

“The issue is important because 25% of all breast cancers diagnosed in the United States are DCIS. DCIS is defined as an abnormal collection of cells in the milk ducts of the breast. It can be life-threatening in some cases. But most of the time DCIS is a low-grade tumor that is best described as something between normal breast tissue and breast cancer. In this country, women diagnosed with DCIS have surgery to remove the tumor, and survival rates are 98%.”

I’ve interviewed dozens of women who’ve been diagnosed with DCIS and they told me stories of their anxiety and confusion over what they were variously told was “precancerous…premalignant…a benign cancer” yet were told – in some cases – to consider bilateral prophylatic mastectomy to treat it.

The JNCI articles summarized last Fall’s National Institutes of Health state-of-the-science conference on ductal carcinoma in situ.

There is such a disconnect in journalists’ relative lack of attention to DCIS at the same time many of them whip up uproars over the US Preventive Services Task Force’s recommendations on mammography. Because it is this same DCIS condition that so often turns up when mammograms are done in younger women – one of the key issues the USPSTF tried to address.

Indeed, after the Fall NIH conference, a debate began about whether to change the name of DCIS. The Journal then reported that there was talk of dropping “carcinoma” from the name because some thought it was an “anxiety-producing term.” Gee, the same anxiety that so many USPSTF critics minimized? Excerpt from an earlier JNCI article:

“Otis Brawley, M.D., chief medical officer of ACS and an oncologist who is in favor of the name change, argues that the medical community can take better care of patients both emotionally and medically if there is a better name. “I think there is a huge amount of confusion,” he said. “I’m much more concerned that we are scaring a whole host of people that have ductal carcinoma in situ who make rash decisions because it’s called ‘carcinoma’–decisions that they wouldn’t make if it was more adequately described for what it truly is.” …

Barbara Brenner, director of Breast Cancer Action, an advocacy group, said it doesn’t make a difference if it’s called “neoplasia,” “carcinoma,” or even “the bad disease.” Conversations about treatment have to happen regardless of what the disease is named, she argues. “I know there is a great deal of anxiety with DCIS, but I don’t think the anxiety would be lessened by calling it something else, because at the end of the day you still have to talk to someone about what to do about it,” said Brenner. She said it’s the treatment that’s scaring women, not the name. In Brenner’s view, the medical community should allocate any resources being spent on the name change to improving risk stratification of patients because the real issue is not knowing whom to treat.
“It’s a nonpriority,” said Brenner, who said she would attend the name-change meeting if the opportunity presented itself. “This is a silly discussion. I understand why doctors want to have it, but it’s not going to help women one iota.”

One way or another, it’s unfathomable to me that journalists would cover USPSTF controversies and fail to report in more depth about DCIS.

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