For LeeAnne L., a 48-year-old mother of two from Kona, Hawaii, receiving a ductal carcinoma in situ (DCIS) diagnosis in April 2024 launched her into months of anxiety-filled decision-making. With a family history of breast cancer — both her mother and aunt had DCIS — she was diligent about screenings, getting mammograms every six months due to dense breast tissue.

“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.”

Each year, more than 50,000 women are diagnosed with DCIS, a non-invasive type of breast cancer. Even though DCIS can’t go outside the breast, it can’t be left alone because some DCIS cells could morph and turn into invasive breast cancer.

Typically, a woman with DCIS is treated with breast conserving surgery (BCS), also known as lumpectomy. The next decision she has to make is whether or not to get radiation therapy (RT). Traditionally, this decision was guided by her doctor, who makes a recommendation based on the patient’s clinical factors (such as age, tumor grade, size and margin status).

But recently, major clinical studies have proven that relying on these clinical factors alone have failed to identify patients who could safely omit RT after BCS. While RT can effectively reduce the risk of recurrence for some women, others with low-risk DCIS may not derive significant benefit from the therapy and may be exposed to unnecessary radiation and its associated side effects. Conversely, omitting RT in women with higher-risk DCIS could lead to undertreatment and an increased risk of recurrence.

The standard treatment options presented to LeeAnne were daunting: either a single mastectomy or a lumpectomy followed by six weeks of radiation and five years of Tamoxifen. Living on Hawaii’s Big Island complicated matters further — having a mastectomy with immediate reconstruction would require traveling to Oahu and spending nearly a month away from her husband, 12-year-old son and 8-year-old daughter.

The stress of the decision took a physical toll, causing her to get shingles for more than a month. Eventually, she decided to schedule a mastectomy for September to avoid radiation’s side effects and long-term medication.

Unlike her mother’s experience in California, where a coordinated healthcare team guided treatment decisions, LeeAnne had to navigate Hawaii’s fragmented healthcare system on her own. This led her to DCIS Facebook support groups, where she heard about DCISionRT — the only risk assessment test for patients with DCIS that predicts radiation therapy benefit.

Yet none of her doctors had heard about the test. When she asked about it, she was met with 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 though she met with two breast surgeons, two radiation oncologists and a medical oncologist, she had to advocate strongly for the test.

Determined to gather all possible information before her mastectomy, LeeAnne persisted in seeking the test. Despite initial insurance denial, she contacted our support team and we helped her get the test. She found out the results just a week before her mastectomy. The results stunned her — she scored 0.8, which means that her risk for recurrence was less than 5%, and she would have little to no benefit from radiation.

By analyzing the individual biology of a woman’s tumor, the DCISionRT test categorizes the risk of recurrence as low, elevated or residual risk. This information allows surgeons and radiation oncologists to determine whether radiation therapy will benefit a particular patient.

  • For women identified as low risk, the test may offer the reassurance of forgoing radiation therapy while maintaining a high probability of a cancer-free future.
  • For those with elevated or residual risk, the test may confirm the need for radiation therapy, and can help optimize treatment plans for improved patient outcomes.

“I nearly fell off my chair because that was not what I was expecting,” LeeAnne says. “This changed my treatment plans. Instead of a mastectomy, I got a lumpectomy, which revealed another surprise — the initial biopsy had already removed all the cancer.”

Today, LeeAnne shares her story in DCIS online support groups, encouraging other women to explore their options.

“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.”

Having avoided more aggressive treatment, LeeAnne now focuses on maintaining her health through regular screenings, exercise and a healthy diet. She alternates between mammograms and MRIs for monitoring, working with both traditional and naturopathic doctors to maintain her health.

“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.”