Should We Rename DCIS?

Ductal carcinoma in situ was all over the news this week, after the Journal of the American Medical Association published “Overdiagnosis and Overtreatment in Cancer, An Opportunity for Improvement.” This is a good, and necessary, conversation. DCIS was front and center as one of the prime candidates for overtreatment, and the panel proposed renaming it Indolent Lesions of Epithelial Origin (or its evocative acronym, IDLE), to lessen fear and potential overtreatment.

I can speak with some authority on the subject, as I was diagnosed and treated for DCIS five years ago. After considerable discussion and two attempts at breast-conserving surgery that failed to get the desired clean margins, the treatment plan my doctors and I landed on was a (single) mastectomy with auxiliary lymph node removal to make sure some cells hadn’t escaped. Luckily, they had not, although the mastectomy uncovered still more cells lurking beyond what the earlier surgeries captured.

I won’t repeat what others have said, but here’s my take on it. You can call it whatever you want. Call it DCIS or precancer. Call it indolent or IDLE. Call it a cab, for all I care. But if I were diagnosed today, with the same circumstances, I’m willing to bet my doctors would make the same recommendation and I would make the same choice. My oncologist told me the odds of my DCIS becoming invasive were 50/50, and I didn’t like those odds. He also told me he would support me if I chose radiation instead. “Wait and see” was not an option then, and I don’t think it would be now given my specific situation.

The other point I want to make is related to that. My book, From Zero to Mastectomy, was reviewed last week on the Breast Cancer Consortium website. While I appreciate the thoughtful treatment Bonnie Spanier gave it and her overall positive review, I want to respond to one area. She said my trajectory took me farther away from the full spectrum of the disease as a precancer, and while she conceded that was understandable at the time, she didn’t feel I gave enough attention to the complexities of DCIS.

The book was not an academic exercise for me. I did not set out to write The Emperor of All Precancers. I felt, then and now, that the best way I could help other women was by sharing my experience.

Here are some links to recent and not-so-recent stories about DCIS.

If you read only one thing regarding the current debate, read “What’s In A Name?” posted on the #BCSM Community website. This piece, by Jody Schoger and Drs. Deanna Attai and Michael Cowher, is the best summary of the issue I’ve read.

Bloomberg News ran a well-balanced story on handling this confusing diagnosis, and I was one of the women interviewed.

CURE Today magazine ran the piece “Redefining the Word Cancer,” in which Debu Tripathy wisely said, “one cannot just declare a new system into existence.”  (Especially a belief system: See: Mammograms, Annual.)

The same point was raised in the New York Times “Well” blog, in its excellent “Scientists Seek to Rein in Diagnoses of Cancer.” My favorite part of this piece was when Memorial Sloan-Kettering’s Dr. Larry Norton said changing the terminology does not solve the problem of doctors not being able to tell patients which cancers will remain indolent and which will go on to kill them.

The best path we have remains the one we’ve always had: individual consultations between doctor and patient, based on individual physical characteristics and risk factors. I would also add levels of risk tolerance. I discussed it a bit in my Bloomberg News interview, and I’ve also written about women who opt for bilateral mastectomies after being diagnosed with DCIS. As the discussion about this poorly understood condition heats up again and the public opinion pendulum swings in favor of watching and waiting, let’s not stand in judgment of their choice.


17 thoughts on “Should We Rename DCIS?

  1. The NYT Wellblog was frustrating in that the very part you bring up–the words of Dr. Norton and the fact that no one can tell which cancer will remain indolent and which will become killers–was not until about the 13th paragraph in. The average skimmer-reader will not get that far; they’ll just assume cancer is being over-diagnosed and that some folks are worrying needlessly. I’m so tired of misleading headlines. It was worth a groan and a chuckle a few weeks ago when I saw “Alice Cooper Slams Mumford & Sons” (he did NO such thing when I clicked to read/watch the video) repeated on various news blogs. But cancer is about life and death–I find the misleading headlines much worse than a groan and a chuckle.

  2. It will soon be 10 years since my lumpectomy and radiation for DCIS. I had a great team and would not want my treatment any other way.

  3. Why YOU Rock? This post tells it all…. I’m calling a cab, alright… and I’m going to ask them to take me west just so I can have you read this to me (sort of like a lullaby!). I agree with every word you have written. My sister had DCIS, too. It was right on her chest wall, over her heart. In other words, easy exit plan if the DCIS wasn’t “IDLE” ….

    The public pendulum really needs to stay center and stay out of it… My feeling,until there is a solid solution to offer better odds, these decisions are, and must remain highly personal and solely between a woman and her treatment team. And frankly, no one else has the right to even express an opinion.

    That’s just my cranky two cents… With you all the way!


  4. Agreed, individuals deserve individualized care and in DCIS, the degree of danger is a mysterious variable. Let’s not, however, overlook some of the variables for which we (as a society) share responsibility: access to quality care; supporting sufficient understanding of science; and a culture of mis-directed fear (heart disease is still #1 killer of women and lung cancer is still top cancer killer).

    Perception of risk is individual, and not always based in intellect. One woman’s dislike of 50-50 is another woman’s glass half full. The public conversation I crave is not about mastectomy but about the slippery slope of dings to quality of life that result from overtreatment. For example, aromatase inhibitors: enduring aching joints may make sense if the medication is actually holding a dangerous disease at bay. If not — if your DCIS was destined to remain in situ — then it’s a crappy way to live.

    Today, an invasive occurrence will almost certainly be caught while treatable in anyone who opts for surveillance for DCIS. Remember the actuarial tables, too: if you kick your DCIS treatment can down the road, it’s entirely possible that something else will be responsible for your death, timely or otherwise.

    Dr Esserman — one of the JAMA authors — explained most of this to me in 2001 and again in 2004. But with too little data and no alternative protocol, we reluctantly chose conservative treatment. I paid a price in quality of life. Now, with 10 additional years of data and more sophisticated analysis, this is one of her theories that has stood the test of time.

    • Thank you for the thoughtful comments. I agree with your cultural assessment. And I have often told people who ask me about fear of recurrence that I’m more likely to have my heart turn on me.

  5. I agree with you completely…I too, was “lucky” enough to be dx’ed with DCIS. My surgeon informed me that “if I had to get b/c, (you know the next part)…it was the best kind to get. Right. Mine was in two different places so lumpectomy wasn’t an option. I was more than happy to have the single mastectomy and be rid of the beast and cancer free. Almost one year to the day later I received the dx of S2 endometrial cancer…sigh.

  6. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  7. I am 48 years old and have recently been diagnosed with DCIS. I have read your book and find myself going back to it over & over again. I am going for my 2nd re-excision on Sept 3 as did not get clear margins the first time around. If I don’t get clear margins this second time around I am going to have a Mastectomy with reconstruction. Thank you so much for sharing your story. It has been a great comfort for me.

  8. I got the news today that I too have DCIS. I have an appointment with a surgeon at UCLA next week. I am scared, sad, and overwhelmed. I don’t even know where to begin. On the other hand, I feel grateful that the prognosis is good and ashamed that I’m not dealing with this better. I want yesterday back! I’ve ordered your book and hope to have it in a day or two.

    • Thank you so much for your comments. I know it’s hard not to do but try not to beat yourself up over your response. There’s no right or wrong way to feel about a diagnosis. Thank you for ordering my book and I hope it helps you! Best of luck with your treatment. Remember to give yourself time to think about it so you can make the best decision for you.

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