Skip to main content
An official website of the United States government

Advancing the Science of Survivorship in Neuro-Oncology

, by Raleigh McElvery, Neuro-Oncology Branch Scientific Communications Editor

Screenshot of Webex thumbnails showing Michelle Mollica, Terri Armstrong, Emily Tonorezos, and Kim Wallgren

OCS Deputy Director Dr. Michelle Mollica moderated the May 2 webinar, which featured NOB Deputy Chief Dr. Terri Armstrong, OCS Director Dr. Emily Tonorezos, and patient advocate Kimberly Wallgren.


Dr. Terri Armstrong joined fellow leaders in the field of cancer survivorship to discuss the needs of those living with brain and spine tumors, as well as goals for the future and research funding opportunities. 

Tumors that begin in the brain or spine are exceptionally rare—they account for less than two percent of all cancers diagnosed each year in the United States. Although some brain tumors are aggressive and others are non-cancerous, most patients will experience high symptom burden regardless of their tumor grade. This can include permanent—sometimes debilitating—neurological effects and treatment side effects that decrease quality of life. As a result, it can be challenging for brain cancer survivors to work at their jobs or participate in everyday activities. 

At the NCI Center for Cancer Research’s Neuro-Oncology Branch (NOB), a group of researchers led by Deputy Branch Chief Terri Armstrong, Ph.D., aims to understand patients’ lived experiences, in order to develop survivorship care strategies that can be integrated into standard neuro-oncology practice.

While survival rates have increased for many cancer types (such as lung and colon cancer), there has been little improvement in survival rates for brain cancer patients in recent decades. Dr. Armstrong’s Patient Outcomes Research Program hopes to change that. During a webinar hosted by the NCI Office of Cancer Survivorship (OCS) on May 2, she discussed the importance of improving survivorship care for this patient population, what her team has learned so far, and the existing research gaps. Dr. Armstrong was also joined by patient advocate Kimberly Wallgren and OCS Director Emily Tonorezos, M.D.

“We believe that survivorship care starts from the time of diagnosis—and the issues impacting that survivorship may be different based on where the patient is in the trajectory of their illness, the treatment that they have received, and other antecedent factors such as their overall health status and genomic predisposition,” Dr. Armstrong said. “We do have patients who live with their brain tumor for many years. In fact, there are nearly 700,000 people in the United States currently living with a brain tumor. We need to understand: What is the quality of that survival and what can we do to improve it?”

Breaking Down Barriers to Survivorship Care

The May 2 OCS webinar is part of a long-term plan to advance survivorship research in neuro-oncology that stemmed from a 2021 symposium sponsored by the NCI-CONNECT program. During this symposium, Dr. Armstrong and her colleagues devised a list of action items that would help them address the unique challenges that brain tumor survivors face. One of their goals was to advance survivorship research in neuro-oncology through funding opportunities. 

During the webinar, Drs. Tonorezos and Armstrong discussed some of these opportunities, as well as the systemic challenges in advancing neuro-oncology research. For example, many patients first learn they have a brain tumor after going to the emergency room and are ushered into surgery less than 72 hours later. “They’re thrust into this world, and it can be quite traumatic,” Dr. Armstrong explained.

Wallgren helped care for her father for over 20 years before he passed away from a rare brain tumor called an ependymoma. “The trauma that the diagnosis had on my father, myself, and my other family members was profound,” Wallgren said. One of her goals today as the executive director of the Collaborative Ependymoma Research Networ (CERN) Foundation, a program of the National Brain Tumor Society, is to improve this experience for newly diagnosed patients. 

“I think something that we all could do is to start introducing language about the trauma early on, instead of waiting until someone is very depressed or anxious,” she said. She also added that providers could help patients by laying out a “roadmap” that outlines the patient’s care team and treatment options.

“Brain tumor patients often have a fragmented clinical course,” Dr. Tonorezos said, “which leads to difficulty enrolling people in clinical trials.” When patients are less likely to participate in clinical trials, it can slow research progress and improvements to care. 

Dr. Armstrong’s team recently conducted a comprehensive assessment of past and ongoing neuro-oncology trials, revealing a complex web of factors driving worsening accrual rates. The clinicians they’ve surveyed have reported that many patients are unable to remain at treatment centers or return for frequent follow ups to meet clinical trial requirements. It can also be difficult for patients to locate clinical trials close to where they live. According to Dr. Armstrong, these are issues that must be addressed if researchers hope to improve study accrual in the future.

Tracking Symptoms Across Patient Populations

As part of their mission to improve care for brain tumor patients, Dr. Armstrong’s team is developing ways to accurately measure patient outcomes and devising interventions to improve quality of life.

One of their largest and longest-running studies is their Natural History Study—an observational study that follows patients to understand what life is like across their entire disease trajectory. Over 1,000 patients have enrolled since the study first launched in 2016. And, nearly 60 percent of the participants who have been living with their brain tumor for more than five years continue to report at least one moderate-to-severe symptom.

“The survivorship interventions for those patients will probably need to be very different from the other patients,” Dr. Armstrong said. “By understanding the similarities and differences within our patient population, we hope to understand how to intervene in order to make things better for each patient.” 

The Natural History Study has also revealed that older patients may have different vulnerabilities and treatment needs than younger patients. Dr. Armstrong’s team is currently using computational approaches to explore symptom patterns across patient populations, in hopes of guiding more personalized symptom management approaches in the future.

Innovative Approaches to Improve Quality of Life

Another primary focus of Dr. Armstrong’s research is investigating the mood-related symptoms that brain tumor patients often experience. She’s asked those enrolled in the Natural History Study to complete surveys that gauge their depression- and anxiety-related symptoms over the course of their disease. The researchers suspect that, in some cases, psychological distress can have a negative impact on disease outcome and survival. 

To alleviate some of this psychological distress, Dr. Armstrong’s team is developing practical interventions that may help brain tumor survivors live healthier and happier lives. For example, her group is currently running a phase 2 trial led by Amanda King, Ph.D., that examines whether virtual reality can soothe patients who feel anxious about neuroimaging. They’re also investigating ways for patients to get help from the comfort of their own homes, including psychotherapeutic interventions that can be implemented via telehealth. They’ve even created a free symptom-tracking app called My STORI that allows patients to manage their symptoms and self-care activities.

At the same time, Dr. Armstrong’s team is also working to understand the sleep disturbances and daytime fatigue that can accompany radiation treatment. They are getting closer to pinpointing the genetic underpinnings of these side effects and have designed a mouse model that recapitulates the human experience. Recently, this preclinical work has inspired a clinical trial using smart wearable devices called Fitbits to assess sleep and circadian rhythms in brain tumors patients.

Opportunities for Survivorship Research

In recent years, Dr. Tonorezos has documented only a small number of NIH grants supporting research on people with brain or central nervous system tumors and their caregivers. “That probably has to do with the short disease trajectory and the fact that these are rare diagnoses,” she told the webinar audience. 

Nevertheless, understanding the unique needs and symptom burdens of this patient population is vitally important. She shared several NIH funding opportunities that could support neuro-oncology survivorship research projects—including one with an application deadline in July and another with a due date in September

“There are many opportunities that exist to explore innovative approaches to improve survivorship care,” Dr. Armstrong added. “I hope that those who specialize in survivorship research will consider including primary brain tumor patients in their analyses. It takes a village to do this work.”

View the full webinar recording >

< Older Post

NCI Neuro-Oncology Branch Hosts Art Exhibition in Honor of Brain Tumor Awareness Month

Newer Post >

Bringing the Patient, Caregiver, and Advocate Voice to Clinicians and Researchers to Better Understand Survivorship

If you would like to reproduce some or all of this content, see Reuse of NCI Information for guidance about copyright and permissions. In the case of permitted digital reproduction, please credit the National Cancer Institute as the source and link to the original NCI product using the original product's title; e.g., “Advancing the Science of Survivorship in Neuro-Oncology was originally published by the National Cancer Institute.”