What 15 Years of A Breast Cancer Patient's Life Looks Like, in Data

I want to tell you the story of a woman who I will call Maya.

That is not her real name. We're changing it to protect her privacy. Maya is a Novellia patient who consented to share her data, and her story belongs to her. But everything else I'm about to tell you is true.  The diagnosis, the drugs, and the ups and downs. The decade and a half of a life lived inside a disease that never fully let go.

In the winter of 2014, Maya (45) sat in a doctor's office and received a breast cancer diagnosis.

Maya was ER+, PR+, and her pathology showed HER2 IHC 1+. While today, Maya would be considered HER2 low, under the classification system of the time, she was consideredHER2-negative. No HER2-targeted therapy was indicated. She moved forward with the standard of care treatment.

The treatment landscape has shifted considerably since 2014  Because of her HR+/HER2- status, the treatment calculus for a patient like Maya diagnosed today would look a bit different than it did in 2014. Depending on her nodal status and risk profile at the time of her original diagnosis, she may well have been eligible for adjuvant treatment with a CDK4/6 inhibitor. That opportunity didn't exist for her in 2014.

The journey, in full

Six weeks after her diagnosis, she underwent a bilateral mastectomy with immediate reconstruction. By February 2015, she was in adjuvant chemotherapy — adriamycin and cytoxan, followed by weekly taxol through June. That summer, she started tamoxifen at 20mg/day. She stayed on it for nearly eight years.

For most of those eight years, she was living her life. Not a patient in a trial. Not a data point in a database.

Then in August 2023, the cancer came back. Metastatic. Bone involvement: spine, ribs, pelvis. She received palliative radiation and started a chemotherapy and immunotherapy regimen (carboplatin, taxol, and pembrolizumab). A December 2023 PET/CT showed improvement. For a moment, things were looking up.

By August 2024, the scans told a different story. Progression across metastatic sites. Her team switched her to trastuzumab deruxtecan (Enhertu), a drug that had just shown compelling efficacy data in HER2-low patients at the June 2024 ASCO conference and was prescribed technically off-label prior to its formal HER2-low approval. This is where her HER2-low status — first recorded in 2014 and effectively invisible for a decade — finally became clinically actionable. By May 2025, she had stable disease. Then in July 2025, Enhertu was held due to an adverse event. By 2026, following an MRI in late 2025 that showed brain progression, she initiated treatment with sacituzumab govitecan (Trodelvy), most recently receiving treatment on April 7 of 2026.

What makes this data remarkable isn't the volume. It's the continuity.

Over the course of her journey, Maya received care across 5 health systems and clinics with 10+ providers across 3 different cities and states. Under the traditional model of siloed real-world data, her story would exist only in fragments — an oncology note here, an imaging result there, a prescription from a cardiologist who never spoke to her breast cancer surgeon.

Novellia holds her complete longitudinal record: over 14 years, 12,800+ structured data entries, 1,300+ unstructured documents. On top of that, she has been tracking her symptoms, adverse events, and medication adherence directly on the Novellia platform. This is not a snapshot of her journey — it's the full clinical narrative, stitched together across every system she touched, from her first diagnosis through her most recent treatment.

That's what EMR-agnostic, patient-consented data looks like in practice. It means we can see what happened in 2014 through the lens of what we know in 2026. It means we can trace the eight-year gap between early-stage treatment and metastatic recurrence: a gap that almost never appears in trial data but defines the real experience of the disease. It means we can understand not just what drugs she received, but in what order, at what doses, interrupted by what events, and followed by what outcomes.

And it means we can ask harder questions. Questions like: what does the early-stage HER2-low journey look like before metastasis? What happens in those years between first diagnosis and recurrence that trial data never captures? As the field now races to bring HER2-targeted therapies into earlier treatment settings, real-world longitudinal data on patients like her may hold some of the most important answers.

Behind every data point is a person who showed up for treatment.

At Novellia, we think about Maya often. Her journey spans a decade and a half. Her HER2 status was recorded in 2014 and didn't meaningfully drive her treatment until 2024. Her experience of breast cancer looks nothing like what a clinical trial protocol would capture.

Novellia exists because this story matters. Because the gap between what clinical trials measure and what patients actually experience is where so much of the real science lives. And because the only way to close that gap, to build drugs and treatment strategies that actually reflect the complexity of a human life with cancer, is to have data that's willing to follow patients all the way through.

We're grateful to every patient who has chosen to share their journey with us. Their data is helping build a future where the next person diagnosed in 2026 has better options than Maya back in 2014.

That's the work. And we're just getting started.

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