DCIS: What’s in a name?

Ductal Carcinoma In Situ

This subject deserves much more time than I can give it today. But a New York Times article, published today, prompted me to post at least some brief commentary. You may need to sign in to the NYT site in order to read it in full, but that requires only your email address and a quick password.

There has been a great deal of discussion in the last few years about DCIS. And rightly so. Many of us know that screening mammograms do not find as many breast cancers as they should, as early as they should. What we do know, however, is that currently, up to 30% of all the types of breast cancers that are currently found by screening mammograms are DCIS. But most people still don’t really understand what DCIS even is. So, first, a few definitions.

Ductal Carcinoma In Situ appears as a cluster of cancer cells in the milk ducts of the breast. As these cells cause changes and cell death in the ducts, they calcify, forming little granules of calcium in a characteristic pattern. Because bones and other calcium containing formations show up easily on X-rays and other diagnostic images, they usually appear readily on screening mammograms. The phrase ‘in situ’ means that the cancer cells have only arisen in the tissue where they started, and have not spread to the surrounding tissue. [Carcinoma in situ definition] In situ carcinoma is therefore ‘non-invasive,’ self-contained in the specific tissue where it resides, and usually ‘cured’ by removal of this tissue. There are other types of cancers that can appear in situ besides ductal carcinoma.

There is some evidence to suggest that most DCIS tumors would never grow beyond the milk ducts and invade the surrounding breast tissue if it were left alone. But not all of them. Researchers have been scrambling to figure out ways to analyze DCIS more accurately, to help predict which ones might be left alone and which are more likely to spread quickly and become invasive. These predictive qualities, however, are far from thoroughly understood or mapped out at this point. One of the problems with DCIS is that the system of milk ducts occupies a large portion of the breasts. So, left alone, DCIS can spread throughout this tree-like system of branching ducts, occupying an ever larger area. Or not. It might even disappear on its own. Or not. And that’s the problem.

The NYT article reports on recent discussions within the oncology community to stop classifying certain types of cancers as cancer. Maybe they’re just ‘abnormal’ cells and that’s all. This conundrum seems to hinge in part on prognosis, which is not always a salient concept in this discussion. There are brain tumors, for example, like glioblastomas, which are not, strictly speaking, cancer, but grow nonetheless if left alone, wreaking havoc and causing disability and even death. The problem seems to be one of semantics. There is so much fear associated with the word ‘cancer,’ that the thinking is that perhaps it is time to remove the word from certain diagnoses altogether.

It’s true that, in many cases, the usual slash/burn/poison cancer treatment protocol may be massive overkill for DCIS. Perhaps even in my own case. I’d have been very happy to have avoided treatment when I was diagnosed with DCIS, because the treatment, not the DCIS itself, is what has left me with a massive aftermath of long and late-term side effects. On the other hand, the cells in my ducts were defined as carcinoma. And in between the time I was initially diagnosed, and the day I had surgery several weeks later, the radiologist who performed the wire localization, just prior to my partial mastectomy, found that it had spread. So, frankly, I’m glad it’s gone.

Perhaps because I ‘only’ had non-invasive cancer, I was never provided with full informed consent or a complete and honest discussion of my options by any of my cancer docs — not by the surgeon, or the radiation oncologist, or the medical oncologist. When I sought help with the treatment side effects that began during and after active treatment, I was brushed off, lied to, and patronized. Some of my cancer docs said I didn’t even have cancer. Ductal carcinoma had perhaps not invaded the rest of my breast tissue, but it had surely ‘invaded’ my milk ducts. It was analyzed by the pathologist, found to have a high nuclear grade, found to have receptors for estrogen and progesterone, found to occupy a spread of tissue that required the surgeon to remove the middle and lower half of my breast right down to the chest wall, so that I would have those all-important ‘clean margins.’ I endured radiation afterwards in order to destroy any of the active carcinoma cells that might not yet have formed calcifications and might therefore be undetectable. Because there was a risk of recurrence, because there was a chance that there might be cells in my breast that would later turn into invasive cancer, I submitted to all this. I was placed on tamoxifen after surgery and radiation were over. And I was never warned about the real impact of any of this on my life.

Here’s what worries me about this discussion. Our healthcare system already demonstrates its inability to handle nuance. So, if the word ‘cancer’ is removed from the diagnosis of ductal carcinoma in situ, how much more confusion, obfuscation and carelessness might women have to endure? How much less informed consent would women like me have to put up with? How much unknown and future risk would we have to adjust to? Does anyone really think that “let’s just wait and see” is a comfortable notion to live with? How many more of us would get the brush-off? How many more of us would ‘wait and see,’ and end up finding a lump that screening mammograms missed?

When we understand so little about DCIS in particular, and breast cancer in general, discussions about what to call it seem irrelevant and premature.

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Tuesday, November 22, 2011 at 02:11 pm, filed under Diagnosis, Recurrence, Screening, Research and tagged , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

7 Responses to “DCIS: What’s in a name?”

  1. Kathi,

    You raise such good points, and thank you for sharing your personal story. I agree that the treatment side effects are often horrific. I think so little is known about this topic, and anyone faced with making the decision whether the treat DCIS is often faced with choosing the lesser of two evils.

    I can tell you have been through hell and back, and there’s no “good” cancer, really.

    Excellent posting!

  2. I read that article too. It’s all a ‘conundrum’ I think was the word used in there.

    It comes back over and over again to the simple fact that we need more research on all of it, not more awareness.

  3. Thanks, Beth. Thanks, Nancy. From what I have read so far of the research, I think I made the right decision to be treated, as my DCIS apparently spread in a matter of weeks, which indicates that it was not the kind that might disappear on its own. I wish I’d been given enough information at the start to pick a different treatment course, because I would likely have chosen to avoid radiation altogether by having a mast with an expander & implant. But I’m not sorry I was treated.

    I do worry that they’re jumping the gun on trying to call DCIS something besides cancer. Whatever they call it, responsible evaluation would still have to include biopsies and pathological analysis to determine the nuclear grade, etc., to determine if it were likely to grow quickly or not. And women would still have to be made aware of its potential to become invasive breast cancer. Which means that scary C word still has to be part of the discussion. Which makes this entire semantic discussion rather pointless.

  4. Today I went to my oncologist to get my results on my right breast. As you know my left breast was removed because of High grade DCIS & Pagets. On my mammo today it shows two areas that are active with calcification, but they are just monitoring because it seems like natural breast change, but it does not stop you worrying with what ifs. Like you said some doctors do not recognise certain cancers as cancer just like DCIS. All I can do it pray they have my diagnosis right because I was lucky last time not to face radiation therapy. My receptors were negitive so no meds either.

  5. Your conclusion is so well reasoned. There is so much we do not know about DCIS. Calling it something else or ignoring it will not make it go away. (BTW–I love the artwork!).

  6. Thanks, Sarah & Rhonda. The whole subject deserves more posts…and we all deserve more options, but they need to be based on research that demonstrates their efficacy.

    Thanks, Rhonda, for the comment on the artwork. That is actually me, with a little ‘splaining added in with Photoshop. 🙂

  7. […] Kathi has been MIA from the blogosphere recently, but this week she has come back with a bang with an insightful and cogent piece of writing on the recent discussion on reclassifying early-stage cancer. […]

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