A reader recently wrote an email seeking my opinion on a controversy, opining “I am sure that you have thought about this . . . a lot.” I’ve struggled with how to respond because, ironically, this controversy brings up issues I’ve actually tried very hard to avoid. The controversy is laid out in a New York Times article. Are premalignant conditions such as DCIS actually cancer and should these conditions “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.”
It’s the word “unneeded” that’s caused me to avoid diving into this issue until now. Did I submit to “needless,” “disfiguring and harmful treatments” for “premalignant and cancerous lesions that are so slow growing they are unlikely to ever cause harm?”
Did the mere hint of cancer compel my doctor to “biopsy, treat and remove it” at “great physical and psychological pain and risk” to me? Was I in fact a victim of “overdiagnosis” and “overtreatment?”
Now that I’ve allowed myself to think about it, here’s where I come down: When it comes to whether DCIS is medically cancer or not, I am not qualified to have an opinion nor do I care what you call it. As a patient, all I care about is getting individualized medical care which, given the witch’s brew of DCIS, LCIS, atypical hyperplasia and micro-calcifications I had in my breast, I believe I got.
Just as importantly, I also want individualized emotional care, which I did not get. Every technician, nurse, physician’s assistant and doctor I spoke to before my mastectomy told me I was “lucky” to have found my DCIS early. No one ever mentioned the emotional downside of my diagnosis. With only the word “lucky” ringing in my ears, I concluded I was not going to die, which was excellent news. But, I also concluded I had no right to any feelings of loss, anger, fear or loneliness. I didn’t know how I fit into the cancer community, if at all, and didn’t seek out support because I believed I had to accept my “luck” and just get on with it.
Much later, after I had my mastectomy and found support at my cancer center, I was overwhelmed by an especially egregious case of DCIS pooh-poohing. As I wrote about in an earlier blog post, the technician who performed my first mammogram post-surgery argued with me that DCIS was not breast cancer. To further drive home her point, she told me she knew a woman with DCIS who also had a mastectomy, “so she wouldn’t have to worry about it anymore.” What I heard her saying right to my face was, “You didn’t have cancer so get over it.”
If we decide DCIS and other premalignant conditions are not in fact cancer, will we avoid unnecessary treatment? Or will we just manage to further alienate people who struggle with cancer emotions but have the added burden of not feeling worthy of those emotions? In fact, if we decide today that DCIS is not cancer, do I have the right to continue calling myself a breast cancer survivor? If I do not, what then do I call myself?
This is a complicated issue and I don’t have any answers. All I know is that I absolutely was “lucky” to avoid chemotherapy and the fear of dying from my diagnosis. Yet, I still wrestle with cancer emotions and sorely needed the emotional support services I eventually found at my cancer center.
Maybe I do care what you call it. All I really want is to make sure all patients get individualized medical and emotional care and support. If we need to use the word “carcinoma” to get them (and me) that level of care and support, then maybe we need to keep using it.
Survival > Existence