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 and the DCIS presented as calcifications on a routine mammogram screening.  Even though I have friends and family who have had breast cancer, I had never before heard of DCIS.

Over the next several weeks, I embarked on a whirlwind of doctor appointments and fell far down the DCIS information rabbit hole.  The more I learned, the more confused I became.  Is it cancer or not cancer?  Which course of treatment is best for me?  What is my risk of developing invasive breast cancer?  Of dying from cancer?  Why is there so much uncertainty around a condition that makes up a quarter of all breast cancer diagnoses, especially when the standard treatment is so aggressive?  

I realized that despite being the “best” kind of breast cancer diagnosis to get, DCIS is perhaps the hardest to figure out how to treat.  This is because there is no surefire way to predict which DCIS will progress to invasive breast cancer and which will lie dormant for years or even decades, and never become life-threatening.  The science is simply not there yet.  

I consulted with three separate breast surgeons, each of whom offered a slightly varied perspective on what DCIS is and how mine should be treated. No matter how many questions I asked my doctors, I could not wrap my head around this:  How could it be that, on the one hand, I need not rush treatment, I had a favorable prognosis, and my DCIS 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.

I culled the Internet, read studies, and learned about the latest clinical trials.  I realized the following:

First, more research is desperately needed so that we can ensure sufficient treatment of the DCIS patients who need it, while avoiding overtreatment of women whose DCIS will never actually threaten their lives.  

Second, there is emerging science around DCIS that holds promise for a future with more individualized, patient-centered treatment options, but in the meantime, DCIS remains a highly confusing diagnosis.  This confusion is leading to treatment decisions being made from a place of fear – fear of the possibility of invasive breast cancer – rather than from a place of knowledge and understanding about actual data and information on DCIS.  

Third, the current available educational resources for DCIS patients do not go far enough explaining the nuance and uncertainty surrounding the condition, or the latest research, and at this time there are no patient advocacy organizations exclusively dedicated to helping women navigate their DCIS diagnoses.  Patients seeking additional information, and specifically online educational resources, are directed to the larger breast cancer activist community, where DCIS is explained alongside forms of invasive breast cancer.  Because of the dearth of information available about DCIS, many women with the diagnosis have inaccurate perceptions of their actual risk of invasive cancer, recurrence and survival. Lumping DCIS together with much more serious forms of breast cancer in the educational and advocacy arenas adds fuel to this fire, leading to inflated panic around the diagnosis, as well as cases of overtreatment and the associated health care costs.

Precisely because of the uncertainty surrounding DCIS, patients should have access to the information and tools to understand what DCIS is (and what it isn’t), their individual risk of developing invasive breast cancer, and the pros and cons of varying treatment options, so they can make a balanced and informed decision about how best to proceed with treatment.  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.

DCIS is a distinct condition from invasive breast cancer, with many open questions and emerging areas of research that should be available in a balanced, clear and digestible format for the tens of thousands of women who are diagnosed each year.  DCIS Understood will help drive the push for individualized, patient-centered DCIS treatment, while also equipping patients with the knowledge to understand the condition, their individual risk profile, and to clarify their decision-making around treatment.  

I firmly believe that if women are empowered to learn about DCIS and navigate the decision-making process from a place of understanding, rather than fear, then whatever treatment decision they make will be the right one.