Like so many others, my DCIS journey began with an unexpected call after a routine mammogram. Calcifications had been found, which led to more imaging, a biopsy—and a diagnosis I didn’t see coming: ductal carcinoma in situ.
But while the beginning of my story is familiar, my path forward turned out to be different from most.
After multiple consultations, I eventually found a trusted breast surgeon involved in the COMET (Comparing an Operation to Monitoring, With or Without Endocrine Therapy) clinical trial who told me I was a candidate for active surveillance—a treatment approach that involves close monitoring with imaging and regular exams, but not immediate surgery or radiation. This option is rarely offered to DCIS patients, but it made sense for me.
Still, getting to that point was far from straightforward. I found myself faced with confusing and sometimes contradictory information—and very few resources that truly spoke to the patient experience of DCIS. While I ultimately felt peace with my decision, the challenges I faced along the way led me to launch DCIS Understood, a nonprofit dedicated to providing clear, accessible information to help others make informed treatment decisions.
Looking back, one tool stands out as particularly helpful in navigating this uncertainty: DCISionRT.
Discovering DCISionRT
My father, a retired physician, was the first to mention DCISionRT to me. In the days before my first surgical consultation, he encouraged me to ask whether this genomic test could be run on my biopsy tissue.
When I brought it up with the surgeon, she told me it was typically used after lumpectomy—but I asked if she could explore whether it could still be done preoperatively. I was trying to gather as much information as possible before making any irreversible decisions.
To my relief, the test was possible—and a few days later, I received my result: a DCISionRT score of 6.8, considered elevated. According to the test, if I were to have a lumpectomy, radiation would be recommended to reduce my risk of recurrence.
A Complex Decision
I then pursued two more surgical consults, and an MRI revealed an additional spot of DCIS. Because of the location of the DCIS and the small size of my breasts, the surgical recommendation began shifting from lumpectomy to mastectomy. While a lumpectomy was still technically possible, it would likely have a poor cosmetic result—and given my elevated DCISionRT score, it would also mean needing radiation, which I was hoping to avoid due to potential long-term side effects.
Eventually, I met with a third surgeon—one who was a principal investigator in the COMET trial—and he presented my case to his hospital’s tumor review board. The board determined that I had two reasonable options:
- Mastectomy, which would offer the greatest risk reduction.
- Active surveillance with rigorous monitoring and hormone therapy, which could also be safe and appropriate.
While the DCISionRT elevated score had demonstrated higher risk and benefit from radiation therapy, I opted for surveillance, and will be monitored more closely than even the COMET trial participants. And if my DCIS progresses, it should be caught early, when it is still highly treatable.
Living with DCIS—and Clarity
Today, I alternate mammograms and MRIs every six months, take low-dose Tamoxifen, and prioritize my health. So far, my DCIS has remained stable. And knowing that I can change course and pursue surgery at any point gives me peace of mind.
Importantly, my DCISionRT score remains a part of my ongoing decision-making. While it didn’t dictate my treatment, it gave me valuable insight. It reminds me to stay diligent with surveillance—and should I ever need surgery, I know I would choose mastectomy over lumpectomy and radiation.
DCISionRT Belongs in Every Patient’s Toolbox
As a patient advocate and founder of DCIS Understood, I often speak with newly diagnosed patients who feel lost in a sea of conflicting recommendations. I believe DCISionRT is a critical piece of the decision-making puzzle and provides an additional layer of data that can clarify choices and help patients have more informed conversations with their care teams.
Every DCIS patient deserves access to this kind of personalized information. I’m grateful I had the chance to use DCISionRT—and I’m committed to ensuring others know it’s available to them, too.
