Why We Exist – Julia’s Story

Welcome to DCIS Understood. My name is Julia and I live in New York with my family. In February 2024, at the age of 43, I was diagnosed with two small areas of low-medium grade ductal carcinoma in situ (DCIS) in my right breast. Like most women, I had no symptoms. My DCIS presented as calcifications on a routine screening mammogram.  Even though I have friends and family who have had breast cancer, I had never heard of DCIS. That moment of confusion and uncertainty is why DCIS Understood exists.

In the weeks that followed, I entered a whirlwind of doctor appointments and fell deep into the DCIS information rabbit hole.  The more I learned, the more confused I became.  Is it cancer or not?  Which course of treatment is best for me?  What is my real risk of developing invasive breast cancer?  Of dying from breast cancer?  Why is there so much uncertainty around a condition that accounts for a quarter of all breast cancer diagnoses, especially when the standard treatments can be so aggressive?  

I quickly realized that despite being the “best” kind of breast cancer diagnosis to get, DCIS is perhaps the hardest to know how to treat.  This is because there is no reliable way to predict which DCIS will progress to invasive breast cancer and which will remain indolent for years — or forever.  The science is simply not there yet.  

I consulted three breast surgeons, each of whom offered a slightly varied explanation of what DCIS is and how mine should be treated. On the one hand, I was told: I need not rush treatment, my prognosis was excellent, and my DCIS diagnosis was not likely to affect my chances of dying from breast cancer.  On the other hand, a radical treatment plan was laid before me: a mastectomy or a lumpectomy with radiation and, because my DCIS was hormone positive, five years of the hormone therapy medication Tamoxifen.  And yes, all the nasty side effects that accompany those treatments.  

The punishment did not seem to fit the crime.

As I read medical studies and learned about ongoing clinical trials, three things became clear to me: 

First: We urgently need more research to distinguish which DCIS requires intervention and which does not — so that women receive necessary care without unnecessary harm.

Second: Emerging science holds real promise for more individualized, patient-centered treatment approaches. But right now, DCIS remains a highly confusing diagnosis. The uncertainty surrounding DCIS leaves many patients making decisions from a place of fear rather than understanding about actual data and information on DCIS.

Third: Existing educational resources for DCIS patients often lack nuance. Most women are directed to general breast cancer materials where DCIS is grouped together with invasive disease. This can unintentionally inflate perceptions of risk and contribute to panic, overtreatment, and avoidable healthcare costs.

Precisely because of the uncertainty surrounding DCIS, patients should have access to clear, balanced information about what DCIS is (and what it isn’t), their individual risk of developing invasive breast cancer, and the benefits and trade-offs of varying treatment options. Women deserve the tools to make informed, thoughtful decisions based on evidence — not fear.  With 60,000 women being diagnosed annually in the U.S. alone, and the numbers rising exponentially, the need for education and advocacy is indisputable and urgent.  I created DCIS Understood to meet this need.

What began as my personal search for clarity has grown into a national effort to ensure that every woman diagnosed with DCIS has access to trustworthy, evidence-based information. DCIS Understood collaborates with leading breast oncologists, surgeons, and researchers who serve on our Advisory Council to ensure our content reflects the latest science and clinical understanding.

We exist so that no woman feels alone, confused, or pressured into decisions she does not fully understand. Knowledge empowers thoughtful, informed choice — and every woman deserves that — regardless of language, health literacy, or access to specialty care.

I firmly believe that if women are supported in navigating DCIS from a place of understanding rather than fear, then whatever treatment decision they make will be the right one for them.