Central Nervous System Tumors: A Challenge for Navigators and Patients
by Guest Author
PHILADELPHIA — Ensuring that the patient with a central nervous system (CNS) tumor is at least introduced to palliative care at the time of diagnosis is where the neuro-oncology nurse navigator can have a substantial impact, said Marlon Garzo Saria, PhD, RN, AOCNS, FAAS, of the John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, California, in his presentation at the 2019 Oncology Nurse Advisor (ONA) Navigation Summit.
The scarcity of specialists in neuro-oncology, as well as the complex and unique needs of patients with CNS tumors contributes to the challenge of caring for these patients, emphasized Dr Saria, an advanced practice nurse researcher in neuro-oncology.
Neuro-oncology is a “growing but small, highly specialized, multidisciplinary field,” he explained. Statistics show that there were only 236 board certified neuro-oncologists practicing in the United States in 2018. Furthermore, the Society of Neuro-Oncology groups nursing with allied health, epidemiology, psychology, pharmacology, and statistics under the category of Other, which comprises less than 3% of its membership.
“We really need to grow the neuro-oncology nursing subspecialty if we want to be able to navigate and take care of patients with CNS tumors,” Dr Saria emphasized.
CNS malignancies are a highly heterogeneous group of cancers characterized by an extensive spectrum of disease, age-specific incidences, and highly variable outcomes with vastly different best practice strategies for management, he explained.
For example, treatment options for glioblastoma, the most prevalent and aggressive CNS cancer in adults, includes only 2 drugs recently approved by the US Food and Drug Administration (FDA) — temozolomide (in 2005) and bevacizumab (in 2009) — and tumor treating fields without and with temozolomide (in 2011 and 2015, respectively). Survival is only 14.6 to 16.8 months after diagnosis. Nevertheless, Dr Saria stressed that a highly-specialized multidisciplinary team including a neuropsychologist or cancer psychiatrist, neuropathologist, neuroimaging expert(s), neurosurgeon, radiation oncologist, medical oncologist, and geneticist/genetic counselor is critically important to optimize patient outcomes.
“I honestly believe that if you suspect that a patient has a brain tumor/CNS cancer that they need to see cancer psychiatrist or psycho-oncologist,” he commented. “We need to get a baseline before we treat them; before we change or alter their cognitive function or behavioral issues.”
Nurse navigators working with patients with CNS tumors should to communicate to patients that every tumor reacts differently and, regardless of the treatment given, the tumor evolves, and we alter the tumor microenvironment by the treatment given.
Some of the features that make CNS tumors unique include their typically catastrophic diagnosis, considerable symptom burden, significant cognitive/psychological burden, and their impact on family and caregivers.
Unlike the quality of life (QOL) trajectory observed for many patients with other cancers, patients with CNS cancers often experience a dramatic initial drop in QOL due to the catastrophic nature of the presenting symptom of the disease (eg, seizure, loss of peripheral vision). In addition, the patient is likely to undergo neurosurgery followed by other treatment and significant cognitive dysfunction within weeks.
“The cognitive and behavioral issues are very distressing, not just for the patients, but also for the families,” Dr Saria stated.
A comment made by his research advisor summed up Dr Saria’s experience with patients with CNS tumor and their caregivers. When meeting a new patient, he would not able to distinguish the patient from the caregiver except for the scar on the patient’s head, and that overall, the caregiver will look worse.
Despite the significant need to introduce palliative care at the time of diagnosis, this should not affect whether or not the patient receives active treatment. Facilitating access to clinical trials is also critically important for these patients.
Saria MG. Navigating central nervous system tumors: screening, treatment, and post-treatment considerations. Oral presentation at: 2019 ONA Navigation Summit; June 13-15, 2019; Philadelphia, PA.
For more information, contact Dr Saria at email@example.com.
Last updated: August 2nd, 2019