Beyond the Scan - A Survivor-Thriver’s Message

A concise reflection on two invited speaking engagements focused on whole-person survivorship, patient-reported outcomes, and accountable care pathways.

When the Survivor-Thriver Perspective Enters the Clinical Room

On October 17, 2026, I served as an invited speaker at the University of Arizona College of Medicine-Phoenix/Banner Health and MD Anderson Cancer Institute 2026 Neuro-Oncology Symposium in Phoenix, Arizona. My contribution centered on two presentation engagements that brought lived survivorship into direct conversation with multidisciplinary neuro-oncology care.

My Symposium Speaking Sessions

10:00 AM - 10:20 AM  |  Living with Brain Tumor - Patient and Family Perspective

Featured podium presentation examining twelve years of lived survivorship, longitudinal clinical data, and what structural neuroimaging fails to capture.

1:20 AM - 1:40 AM  |  Patient Advocacy Discussion & Q&A

Interactive multidisciplinary forum co-led with Flo Spyrow, JD, MSN/MHA, alongside symposium faculty.

Session 1: Living with Brain Tumor - Patient and Family Perspective

My presentation challenged neuro-oncology teams to consider what happens when treatment addresses the tumor but does not systematically assess cognitive, psychosocial, functional, and identity-level consequences.

Look. Listen. Learn.

LOOK - See the whole person beyond the tumor. Alongside imaging, evaluate daily function, professional identity, family relationships, work capacity, executive cognition, and quality of life.

LISTEN - Treat patient-reported symptoms as clinical data. Subtle, intermittent, or hard-to-quantify concerns can remain important even when structural scans appear stable.

LEARN - Strengthen longitudinal survivorship through pre-treatment baseline testing, interdisciplinary handoffs, and long-term survivorship planning.

Why the Lived Experience Matters

I used my own meningioma journey to illustrate why the clinical tumor timeline and the human life timeline are not the same. A July 2014 evaluation identified a WHO Grade 1 right spheno-orbital/sphenoid-wing meningioma with carvernous sinus involvement and hyperotosis. An August 2014 craniotomy addressed the tumor but was followed by years of visual, neurological, cognitive, functional, and professional adaptation.

The central message was clear: survivorship is longitudinal, not a discharge destination. A stable MRI does not necessarily mean that daily functioning, cognition, emotional health, or quality of life has returned to baseline.

Session 2: Patient Advocacy Discussion & Q&A

At 1:20 PM, I joined Flo Spyrow, JD, MSN/MHA, and fellow symposium speakers for an interactive Patient Advocacy Discussion & Q&A. The discussion moved from lived experience to system responsibility, emphasizing how multidisciplinary teams can better recognize and respond to survivorship needs.

Three questions framed the discussion:

·       Where can a pre-treatment cognitive, mood, and functional baseline screen fit within an existing clinical pathway?

·       After neurosurgery or radiation therapy, which discipline owns the referral to neuropsychology, cognitive rehabilitation, psycho-oncology, and related supports?

·       How can advocacy organizations such as MBTN partner with multidisciplinary teams so patient-reported outcomes become actionable clinical knowledge?

Five Takeaways for Whole-Person Survivorship

1. Establish a baseline. Assess cognition, mood, daily function, vision, and role performance before treatment whenever possible.

2. Reassess over time. Follow functional, neurocognitive, and psychosocial outcomes through survivorship, not imaging alone.

3. Validate the patient report. Use patient-described changes as meaningful information that can guide further assessment.

4. Refer and close the handoff. Create accountable referral pathways and identify who is responsible for completing the transition.

5. Make survivorship visible. Document functional, psychosocial, and neurocognitive outcomes in the health record alongside tumor surveillance.

Why This Matters for MBTN

These speaking sessions reinforced MBTN’s commitment to whole-person survivorship. Brain tumor care must extend beyond treatment of the tumor to the realities of living after diagnosis and intervention. The goal is not simply survival. It is informed, supported, functional life after treatment.

Contact & Speaking Inquiries

Jo-Anne ‘Joh’ Evans Coleman, PhD, EdD, CNP | Founder & CEO, Meningioma Brain Tumor Network, Inc. (MBTN)

Email: drecinmd@meningiomabtnetwork.org | Phone: 443-823-2376

www.meningiomabtnetwork.org | CoLaB-orating Together