In recognition of Brain Tumor Awareness Month, Mary Michele Barden, MD, Assistant Professor of Neurology (Neuro-Oncology) and Associate Director of the Neuro-Oncology Fellowship Program, speaks about the challenges of caring for patients with brain tumors, promising developments in treatment, and what inspires her.
What are some of the biggest challenges you face in caring for patients with brain tumors?
Many patients with brain tumors will, at some point in their disease course, experience a significant change in how they function. Depending on which part of the brain is affected, a person’s language, memory, mobility and, more broadly, independence and ability to engage with the world can all be impacted. These symptoms are difficult for patients and their loved ones and present a challenge to the neuro-oncologist caring for them. Our job is not simply to treat the tumor, but to help palliate and navigate the neurologic decline that comes with it. I am so grateful that here at Smilow Cancer Hospital, we have a wonderful team of social workers, oncology care coordinators, and palliative care providers who collaborate in this effort.
There have been some promising developments from clinical trials for certain types of brain tumor therapies in recent months. What questions should patients ask their doctors about enrolling in clinical trials?
I encourage patients to ask questions to better understand all their options. What is the standard of care approach and expected efficacy? Am I a good candidate for a clinical trial? Why or why not? What other trials are available to me besides this one? When discussing a particular trial, ask questions to understand its purpose. Why do researchers think this investigative treatment might be effective? Has this treatment been tested before and if so, what was the outcome? Does this trial include the use of a placebo? It also helps to know how a trial may impact quality of life. Does the trial require additional testing and appointments that would not be part of normal treatment and monitoring? What are the anticipated side effects? Will there be additional restrictions to diet, medications, or activities? Clinical trials are an important tool in Neuro-Oncology but are not the right fit for everyone and that’s okay!
As we honor Brain Tumor Awareness Month, what do you want our patients and families to pause and remember?
To patients – remember to give yourself grace. Being diagnosed with a brain tumor is a life-altering event and it is natural to experience complex emotions surrounding that. Let your family and friends, those who love you, help you.
To caregivers – remember to take care of yourself. You are in the best position to help your loved one when you also tend to your own physical and mental well-being. You too should not be afraid to seek help.
To both – remember to talk openly and honestly with each other. Come together to outline your priorities as a family. Anticipate that there will be setbacks and unexpected changes along the way. Be intentional in finding moments of joy in the new normal. There will be difficult conversations along the way but know that at Smilow we are here to help you beyond just treating the cancer.
What inspires you as a neuro-oncologist?
I draw inspiration from many sources, but perhaps my patients and their families most of all. Every day in my work I see people facing the diagnosis of a brain tumor. They come from all backgrounds and walks of life, yet many show the same incredible courage and resolve. Patients ask me not just how they can help themselves, but how they can help others with their disease. I witness the grace and grit they show in adapting to their functional impairments. Caregivers look to me for guidance in how to best support their loved one. I see how communities rally together for someone in need. Helping people navigate this journey is endlessly humbling and my greatest privilege.
My colleagues are another constant source of inspiration. Neuro-Oncology is truly a multidisciplinary field, a team sport. As neuro-oncologists we work closely with neuropathologists, radiation oncologists, neuroradiologists, neurosurgeons, and many others to aim to provide the best of care. These individuals work at the forefront of advances in treatment, quality improvement, and trainee education. The nurses, APPs, and hospital staff are also tremendous in their support. I came to Yale almost 12 years ago as a medical student and have remained here ever since, largely because of the inspiration and energy I draw from the people who work here.