Knowledge Brings Confidence with DCISionRT

When LeeAnne L., a 48-year-old mother of two from Kona, Hawaii, received a diagnosis of ductal carcinoma in situ (DCIS) in April 2024, her world suddenly became filled with uncertainty and difficult decisions.

With both her mother and aunt previously diagnosed with DCIS, LeeAnne understood the importance of staying vigilant about her breast health. Because she also had dense breast tissue, she faithfully underwent mammograms every six months.

“When you hear the word ‘cancer,’ that’s scary,” LeeAnne says. “But once you realize these are the cards you’re dealt, you have to accept it and take it head-on.”

Understanding DCIS

Ductal carcinoma in situ (DCIS) is considered a non-invasive form of breast cancer. Each year, more than 50,000 women are diagnosed with DCIS. Although DCIS remains confined to the milk ducts and has not spread outside the breast, it still requires treatment because some DCIS cells can eventually develop into invasive breast cancer.

For many women, treatment begins with breast-conserving surgery (BCS), often called a lumpectomy. After surgery, one of the biggest decisions becomes whether radiation therapy is necessary. Traditionally, these recommendations have been based on clinical factors such as age, tumor grade, size, and margin status.

However, newer research has shown that clinical factors alone may not fully identify which patients will benefit most from radiation therapy and which patients may safely avoid it.

Facing Difficult Treatment Decisions

LeeAnne was initially presented with two treatment paths:

• A single mastectomy
• A lumpectomy followed by six weeks of radiation and five years of Tamoxifen

Living on Hawaii’s Big Island made the decision even more emotionally complex. A mastectomy with reconstruction would require traveling to Oahu and being away from her husband and children for nearly a month.

The emotional stress became so intense that LeeAnne developed shingles for over a month during the decision-making process. Eventually, she scheduled a mastectomy for September because she hoped to avoid radiation therapy and long-term medication.

Searching for More Answers

Unlike her mother’s experience years earlier in California, where her care team helped guide treatment decisions in a coordinated way, LeeAnne often felt she was navigating the healthcare system on her own.

While searching for support online, she discovered DCIS Facebook groups where women were discussing a test called DCISionRT — a risk assessment test designed for patients with DCIS that helps predict whether radiation therapy may provide meaningful benefit.

Yet when she brought the test up to her doctors, she encountered resistance.

“I got a little bit of pushback,” LeeAnne says. “The doctors weren’t familiar with the test and said I needed to follow the ‘standard of care’ — radiation after surgery. But in my gut, this just seemed like too much.”

Even after meeting with two breast surgeons, two radiation oncologists, and a medical oncologist, LeeAnne continued advocating for herself and seeking additional information before moving forward with surgery.

A Test That Changed Everything

Determined to understand all of her options, LeeAnne pushed forward with obtaining the DCISionRT test. After initially facing insurance denial, she eventually received the test results just one week before her scheduled mastectomy.

The results surprised her completely.

LeeAnne received a score of 0.8, indicating her recurrence risk was less than 5% and that she would likely receive little to no benefit from radiation therapy.

DCISionRT works by analyzing the individual biology of a patient’s tumor and categorizing recurrence risk as low, elevated, or residual risk. This information can help doctors and patients make more personalized decisions about radiation therapy after surgery.

For some women identified as low risk, the test may provide reassurance that radiation can safely be avoided. For others identified as higher risk, it may help confirm the benefit of radiation therapy and support treatment planning.

“I nearly fell off my chair because that was not what I was expecting,” LeeAnne says. “This changed my treatment plans.”

Instead of undergoing a mastectomy, LeeAnne ultimately had a lumpectomy. During surgery, another unexpected finding emerged — the original biopsy had already removed all of the cancer.

Advocating for Other Women with DCIS

Today, LeeAnne shares her experience in online DCIS support communities to help other women understand that they may have additional options and conversations worth exploring.

“Women with DCIS are overwhelmed with so many decisions,” LeeAnne says. “I tell them about DCISionRT and my experience. Even if your doctors don’t present it as an option, it’s out there. But you have to advocate for yourself to get it.”

LeeAnne now focuses on maintaining her health through regular screenings, exercise, and healthy lifestyle choices. She alternates between mammograms and MRIs and works with both traditional and naturopathic doctors as part of her ongoing care plan.

“I feel confident with DCISionRT that my recurrence rate is very low,” LeeAnne says. “Now, I can move forward with my life and enjoy it to the fullest. The results of this test saved me from what I felt was an over-treatment of my DCIS.”

A Message from Learn Look Locate

At Learn Look Locate, we believe knowledge can help patients feel more grounded and empowered during some of the most difficult moments of their lives. LeeAnne’s story is a reminder that asking questions, understanding your options, and advocating for yourself are important parts of breast cancer care.

Every woman’s diagnosis and treatment journey is unique. Stories like LeeAnne’s help open conversations about personalized care, informed decision-making, and the importance of feeling heard throughout the process.