From Navigating the Unknown to Building a Movement: My DCIS Journey

The bad news is you have ductal carcinoma in situ. The good news is that DCIS is the best type of breast cancer to get.

Those were the words of the pathologist delivering my biopsy results. I was holding the phone in one hand and packing a suitcase with the other. It was February 2024, just days after my father-in-law passed away, and our family was preparing to travel from New York to Pennsylvania for his funeral. Emotionally overwhelmed, I had no space left for new trauma — so when I heard “DCIS (ductal carcinoma in situ),” I hoped it might be another benign blip on the radar of my dense breasts.

I had never heard of DCIS. “So, what are the next steps?” I asked, channeling my inner Type A. The pathologist replied, “You need to schedule an appointment with a breast surgeon.” When I asked if it could wait, he gently urged me to get started.

I was 43. And DCIS, it turns out, is very real.

A few weeks and tests later, I had my full diagnosis: two small areas of low- to medium-grade DCIS in my right breast. The pathologist was partly right — DCIS is technically the “best” kind of breast cancer to get — but what he failed to mention is that it’s the hardest to know how to treat.

DCIS, often referred to as “stage 0” breast cancer, is a pre-invasive condition where abnormal cells are confined to the milk ducts and haven’t spread elsewhere. It can, but often does not, lead to invasive cancer. Studies estimate that 50–80% of untreated DCIS would never become life-threatening. Yet, because we can't predict which cases will progress, nearly all are treated aggressively: surgery, often followed by radiation and five years of hormone therapy.

The lack of certainty and consistency around DCIS that I encountered was staggering. Each of the three breast surgeons I consulted explained it differently. Even the terminology varied—from “a precancerous condition” to “cancer just lying in wait.” I was anxious and confused. I fell into the DCIS information rabbit hole, and the questions abounded: Was this cancer? What was my real risk? Why so much uncertainty for a condition that accounts for nearly a quarter of all breast cancer diagnoses?

Ultimately, I learned the science simply isn’t there yet. We can estimate risk based on certain factors, but there’s no definitive way to know if or when DCIS will become invasive. More research is urgently needed so doctors can offer personalized care and avoid both under- and over-treatment.

As I learned more about DCIS and emerging research, I felt increasingly uncomfortable with the idea of a mastectomy (the surgical recommendation) for a non-invasive condition that might never threaten my life. I discovered clinical trials in the U.S. and abroad exploring active monitoring as an alternative to immediate surgery for low-risk DCIS. Active monitoring — a long-accepted approach for some prostate cancers — involves closely watching DCIS through imaging and exams, with treatment only if there are signs of progression.

My first two surgeons dismissed the idea, citing a lack of data. But the third surgeon I met was involved in the U.S.-based COMET (Comparing an Operation to Monitoring, with or without Endocrine Therapy) trial. He told me outcomes looked promising for patients like me. Although the trial was closed to new participants, he offered to follow me under an active monitoring plan.

I said yes.

I now alternate mammograms and MRIs every six months, take low-dose Tamoxifen, and live my healthiest life. So far, my DCIS has remained stable. I sleep well knowing I can change my mind and have surgery at any time. In December 2024, the first published COMET results confirmed what I had come to trust — that active monitoring is a safe and reasonable option for certain patients, at least in the short term.

After making my decision, I felt a sense of peace about my health. But I couldn’t shake the feeling that too many women face this same confusing diagnosis without access to clear, current information. I was lucky to have the time, support, and resources to research my options. Most patients don’t. And when they turn to online resources, DCIS is listed as just one “type” of breast cancer, with little nuance or updated research. That only fuels fear — and overtreatment.

That’s why I founded DCIS Understood (dcisunderstood.org), a nonprofit dedicated to educating and supporting DCIS patients. We offer clear, accessible information about the condition, treatment options, and emerging research, empowering patients to make individualized, informed decisions.

DCIS deserves its own advocacy movement. My goal is to ensure women facing a DCIS diagnosis have a place to turn for trusted information and support in making the treatment decision that feels right for them.

Because when patients better understand DCIS, they can choose a path forward with confidence. I know I did.

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