Personal cancer #journalism, #DCIS and the terminology of #cancer

Cancer and war metaphors —  as in “He fought a courageous battle with cancer” — are problematic but common. If they make people feel better, I can live with them. It seems like the Kellers — former NYTimes editor and his wife – were too harsh when they took on the metaphor and  knocked a woman for tweeting about her life with terminal cancer.

I thought today’s Globe story by Karen Brown did a good job of describing DCIS and why she rejected some of the common recommendations about screening and treatments. But, I think it  would have benefited from a reference to debate about whether  DCIS should be called cancer anymore.  Here’s a comment from  a reader of the story.

Since ductal carcinoma in situ is precancer, not cancer, some cancer experts feel that the “carcinoma” should be removed from the diagnostic term. I wonder what the author would have chosen for treatment if her problem was labelled “indolent lesions of epithelial origin” or IDLE, one of the names suggested. From the NY Times 7/29/13: ‘The recommendations, from a working group of the National Cancer Institute, were published on Monday in The Journal of the American Medical Association. They say, for instance, that some premalignant conditions, like one that affects the breast called ductal carcinoma in situ, which many doctors agree is not cancer, should be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.'”

Here’s what author Karen Brown had to say about her DCIS in the Globe story:

ss globe

“My precise diagnosis — known by its acronym DCIS — only made things more confusing. DCIS is a noninvasive, “stage 0” cancer that lives inside the milk ducts of the breast. It accounts for about 60,000 of the country’s 200,000 breast cancer diagnoses annually. One reason a growing number of researchers discourage early mammograms is that many more women will be diagnosed with DCIS and, they argue, get needless, invasive treatment.

In an estimated 70-80 percent of DCIS cases, the cancer cells will never leave the ducts, never metastasize into the rest of your body, and never kill you. Had I waited until I was 50 to get my first mammogram, it’s likely doctors would have found the very same DCIS — still sitting demurely inside my ducts — and we could have dealt with it then.

But it’s also possible I would have been among the smaller percentage for whom DCIS cells become more aggressive, nudge their way out of the ducts and become invasive. Since there’s currently no clinical test to tell who is in which group, most oncologists assume you’re at the highest risk and treat accordingly.

That approach jibes well with my own worldview — namely, that there’s no such thing as overtreatment when the person being treated is you. That’s what I was thinking when I went in for my first surgical consult, with my husband, Sean, and my friend Miriam along for support. During the time it took me to change into my front-opening hospital gown, I had decided to make it easy on all of us — “Feel free to just lop the whole thing off.”

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