When a Patient Inquiry Became a Lesson in Leadership and Grit
A few years ago, my inbox started lighting up with messages about a determined patient who was certain she belonged on the hot‑new neuroendocrine clinical trial. She was talking to every NET specialist across the country, and, in a community as small as ours, that means all of us compared notes pretty quickly. Calls came in from DC, LA, Rochester… I braced for two possibilities:
Endless doctor‑shopping, or
Someone smart enough not to accept no without hearing why in person.
At the time, we had zero open slots for the trial, and explaining that never gets easier. I tried to spare her the cross-country trek, but Ashley insisted, so we booked a visit. (For the record: it was 2022, not 2019; time just plays tricks on us (me?)
Beforehand, she made it crystal‑clear: not looking for a second opinion, just the fastest route onto that study. During her appointment, though, her oncologist and I spent hours unpacking the biology of NETs, the trial’s design, and why it wasn’t her best option, open slot or not. We looped in a second specialist who framed the same “why” from a different angle, and set her up with a personalized plan for her that has thankfully done well so far.
That was the pivot point. Once the reasoning clicked, Ashley’s trust settled in, the anxiety around “missing out” eased, and she left with an individualized plan that made sense for her tumor biology. The thank-you note she sent later still lives in my “read on hard days” mental folder.
When we were looking for a patient voice to be on a panel for NANETS last year, Ashley was the first person who came to mind. I knew she’d speak to patients and providers with equal clarity, and she did.
Ashley’s résumé already looked like three overlapping lifetimes when, ten months after her son was born, 2021 blindsided her with metastatic NET. Even with a clinical background, she fell into “default trust.” A misread scan cost precious time (lesson learned). She dove into the literature, found true sub‑specialists, and built a team that spoke her language. Three near‑misses with mortality in one year reinforced what her friends call stubborn grit and what she calls sheer will, all while juggling a demanding workload, marriage, and toddler road‑trips in a six-wheeled John Deere toy truck.
What strikes me isn’t the drama, it’s how intentionally Ashley humanizes every step. Whether mentoring junior leaders or texting a newly diagnosed stranger from a LACNETS (now NCF) meeting, she reminds us that everyone is somebody’s somebody.
Community isn’t extra credit; it’s oxygen. Showing up might be a five-minute check-in or a cross-country coffee when treatment brings a fellow patient to town.
What I Took Away
Information is power, but only if you chase it. Ask uncomfortable questions until you get answers that land.
Grit is a muscle. Build it before you need it; run toward the challenge.
Believe you can. Those three words carried Ashley through crash sites and chemo chairs.
Every day is negotiable. Non-negotiables shift when life gets chaotic; flexibility is resilience.
For Your Nightstand
Ashley reads like most of us breathe. Her “desert‑island” picks for anyone touched by cancer (and I would argue, for anyone, period, because cancer teaches us so much about being human beings and empathetic creatures. It is a reminder that life is precious, and we need to value it.)
The Cancer Code by Dr. Jason Fung – a refreshingly clear roadmap through the biology (and politics) of cancer.
How to Starve Cancer Without Starving Yourself by Jane McLelland – practical, empowering, and surprisingly hopeful.
Our whole conversation is raw, unfiltered, and occasionally funny (conspiracy‑theory detours included). Grab a mug of something comforting, press play, and let Ashley’s brand of tough love and radical optimism sink in. Then ask yourself: What questions am I not asking?
If her story moves you, pass it on to someone you think would benefit. You never know whose “plane crash moment” is waiting just around the corner.
💬 Connect with Ashley on LinkedIn and keep an eye out for her upcoming advocacy work on the East Coast.
And if you like these reflections, subscribe to our newsletter (launching soon!) for monthly behind-the-scenes musings, bloopers, and book recs too good to gatekeep.
Welcome to episode 3 of TayTalks. Stick around; the ride’s only getting better.