The Report That Changed Everything

Why reading my medical records became one of the most important habits in our cancer journey.

When I was discharged from the emergency room, I thought I knew what had happened. The diagnosis was pneumonia. A few days later, I logged into my patient portal and started reading the reports from that visit. Buried in the radiologist's report was a sentence that stopped me in my tracks. It referenced a “known transitional cell carcinoma.”

No one had mentioned cancer. No one had told me they suspected a recurrence. I discovered it because I was reading my own medical records. That moment changed one of the most important habits we've developed throughout our cancer journey. Now I read every report. Not because I don't trust my doctors, but because I want to better understand what's happening in my own body. Because I want to ask better questions. Because I want to be an active participant in my care.

That habit has mattered more than once. A few years later, while reading through my clinical notes, I noticed a section I had never paid attention to before. It looked something like this:

“Genetics. Foundation testing, MSS, TMB 1 Mut/Mb, FGFR3-TACC3 fusion, CDKN2A/B loss, KDM6A loss, TERT promoter -124C>T.”

To me, it looked like alphabet soup, a few lines of letters and numbers that meant absolutely nothing. So I asked. My doctor's team explained that it referred to FoundationOne genetic testing. I requested a copy of the full report, and as I read through it, one finding stood out: FGFR3.

That one question eventually led to a conversation about targeted therapy. Later, it opened the door to a clinical trial targeting that same genetic alteration, and that treatment has now kept me in remission for nearly two years. Would those things have happened anyway? Maybe. I'll never know. What I do know is that reading my medical records helped me ask the questions that led to those opportunities.

That's why we encourage patients and caregivers to read their medical records. Not because you'll always discover something unexpected. Not because you should second-guess your healthcare team. But because understanding your own medical information can help you become a more informed partner in your care.

Every cancer journey is different, and every person will make different decisions. This is simply one habit that made an enormous difference in ours. If you've never read the notes after one of your appointments, consider logging into your patient portal this week and taking a look. You may not understand everything you read, and that's okay. Write down your questions and bring them to your next appointment.

Sometimes the most important thing you can take to your doctor isn't an answer. It's a better question.

We share experiences, not prescriptions.

Go Deeper

Practical Guide Video
Watch the Guide → Read Your Medical Records
A practical look at why we read our records and how you can begin reviewing yours.

Related Conversation
Watch the Conversation → Becoming an Active Participant in Your Own Healthcare
A broader conversation about engaging with your care, asking questions, and making informed decisions.