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.
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