You Are the Most Important Member of Your Medical Team

Hello Lisa. I thought it might be helpful for you to have an overview of our journey.

A friend had called a few days before. His friend's husband was just diagnosed, he said. Can you reach out? Someone who knows someone who knows me, and then an email like this one, from a care partner trying to get her feet on the ground while the ground is moving.

A diagnosis that came back

Linda's husband Mark had been diagnosed with HPV-related squamous cell carcinoma of the base of the tongue the previous October. Five rounds of chemo, 33 radiation treatments. His surveillance score dropped to zero. They thought they were through it and could finally catch their breath, and then the number started climbing. By June, biopsies confirmed the cancer had spread to his lung and a mediastinal lymph node. Stage IV metastatic. The oncology team proposed pembrolizumab combined with chemotherapy, every three weeks, and called it palliative treatment. That does not sit well with us, Linda wrote.

What "palliative" actually means

The first time a doctor used that word with me, I thought it was a synonym for hospice. I thought I was dying that year. I remember standing at the Nordstrom half-yearly sale that summer, doing my annual underwear stock-up, and putting them back on the rack because I did the math and decided I wouldn't be alive long enough to get two years of use out of them. What I didn't understand yet is that palliative just means the treatment goal is control, quality of life, and time rather than cure. It is a description of a strategy. Many metastatic patients have years of durable response. You can have many good summers, and you should probably have decent underwear for them. That reframe doesn't make the diagnosis easier, but it changes what you do next, and what Linda did next mattered.

Three appointments, no framework

She already had three specialist appointments lined up within the week. MD Anderson, Cleveland Clinic, and Ohio State. She had done everything right to get there and still had no framework for what to ask when she and Mark arrived. For a long time, what I could offer someone in that position was my own experience. I could tell her what palliative actually means, tell her to ask about clinical trials before starting standard of care, and tell her she's allowed to call MD Anderson herself. That still matters. But now I have something else. I got Linda started on CureWise so she could get insights grounded in Mark's actual situation, not just mine.

The question that couldn't wait

What came back through CureWise wasn't statistics or a treatment summary. It was a specific, urgent question: before Mark starts any treatment, has the oncology team looked at clinical trials? Some trials are only open to patients who haven't yet received any treatment in the metastatic setting. That window closes the moment treatment starts, and moving quickly without asking first can cost you choices you didn't know you had. By using CureWise they had specific trial numbers to raise with the oncology team and understood why the timing of those conversations mattered.

Genomics, liquid biopsy, and what "targetable" means

Our next conversation was about genomics, liquid biopsy, PIK3CA mutations, and what "targetable" means in practice. With more knowledge, Linda crafted a well-thought-out message in advance of the appointment that was sent to Mark's care team. That message outlined their specific medical questions, concerns, and clinical trial options. This set the stage for the appointment and enabled them to walk into MD Anderson as prepared as possible.

Leading, not waiting

CureWise gave her the language to walk into those rooms as someone leading her husband's care, not waiting for someone else to lead it for her.