Guiding Lights: The Critical Role of Navigators in Neuro-Oncology

Imagine hearing the news, “you have a brain tumor.” Five words that can cause your world to freeze and spiral all at once. As a senior nurse navigator within the neuro-oncology space, I have seen patients and their loved one’s face uncertainty and the need to make treatment decisions with little time to even process the life-altering news those 5 words brought them. Those 5 words can leave many feeling powerless, hopeless, and alone.

Now, imagine that you have a navigator to walk alongside you, advocate for your treatment goals, empower you to make educated decisions for your care, and support you and your loved ones throughout the ups and downs of this unanticipated life change. As most of you know, a navigator can serve as a light in the darkest of times. We understand what an honor and privilege it is to hold space for the difficult decisions, frustrations, fears, hopes, determination, and wins that come along throughout an individual’s treatment journey. Let us dive deeper into the neuro-oncology navigator’s role as an advocate, compassionate supporter, educator, and crucial member of their multidisciplinary team. My hope for you as you read this is for you to gain a better understanding of the complex field of neuro-oncology navigation and to be reminded of simple tools you can utilize to support patients who face an unsolicited journey with a brain or spinal tumor.

As with all specialties, the field of neuro-oncology requires disease-specific knowledge-based training. Disease diagnosis and treatment look much different within this field from other cancer types throughout the body in the staging, understanding, and identification of appropriate treatment and/or supportive interventions. Tumors found within the central nervous system (CNS) require highly specialized treatment from a multidisciplinary team of experts who know how and when to pivot their patient’s care plan as new therapies emerge and as the patient’s needs and treatment goals evolve. While this diverse team holds the wisdom and direction for tumor treatment, the navigator’s role is to advocate for the needs of the patient and their loved ones. The navigator’s position in walking alongside a patient and their loved ones helps them to advocate for what matters most to the patient.

Initially, the navigator serves their patients through validating their feelings and experiences wherever they are along their care continuum, whether that looks like anger, despair, acceptance, or hope. Understanding and compassion are the first tools the navigator must engage to support the patient and their loved ones as they process and accept the diagnosis. These tools allow the navigator to pause with the patient and create a safe space that encourages them to recognize what their diagnosis means to them, their future, and their next steps with no judgment or expectations. This allows the patient to be open to learning what their treatment options are and how they may impact their quality of life. Helping the patient to take a step back to see the bigger picture and focus on what their goals of care are will allow them to move forward with confidence that they are making informed decisions.

Not only do navigators ensure that gaps in care are addressed and that their patients are able to achieve timely access to care, we also strive to anticipate patient and caregiver needs before they present themselves. As navigators, we must proactively plan for “what if” scenarios and empower our patients to access the appropriate assistance in a variety of situations. Sometimes that can be as simple as providing them the telephone number for the on-call service line should a need present itself after the office is closed. In other instances, anticipating needs may look like reviewing a list of questions our patients can ask their provider through their patient portal or during their next appointment, or even bridging that gap and asking those questions on behalf of the patient. One of the most important tools navigators can utilize is to allow the patient to ask all of their questions, answering the ones we have the ability to answer and helping them access the answers we are not able to address. This reduces patient and caregiver anxiety, avoidance, and apprehension because the answers to their questions may assist them in their decision-making process.

The navigator wears many hats, and a large one is that of educator. Not only as it relates to disease diagnosis, treatment options, and symptom management, but also as it relates to supportive resources. Often, patients are not aware of the different resources that may be available to them at their current treatment center, or even that there are a vast number of supportive resources available in their present community and beyond. Whether you are a navigator within a healthcare system or a navigator within a nonprofit organization, it is important to remember that it is not expected that you know all the answers, but rather that you know how to help your patients access the answers to their individual questions.

If your role is in a healthcare system, familiarize yourself with the supportive resources within your institution that you can recommend your patient access. Services like social work, palliative care, integrative medicine, and even a disease-specific support group can fortify your patient’s resilience and commitment to continuing along their healthcare journey with hope and inspiration.

If your role is outside the constraints of institutional affiliation restrictions, look into sharing supportive and informative resources like www.TriageCancer.org for legal-specific inquiries. Peer-to-peer mentorship programs like www.ImermanAngels.org can help provide an avenue where your patients can connect with individuals who have journeyed along a similar path. This service is available for caregivers as well.

Resources like www.PsychologyToday.com can help patients and caregivers alike find therapeutic services for specific needs like support groups, one-on-one counseling sessions, and even virtual options. Other resources that offer a wide range of services like www.CancerCare.org and www.FindHelp.org can help connect patients and caregivers to financial assistance and other types of social care.

Supporting our patients is not a 1-person job. It takes a multitude of services to help our patients during one of the most difficult times in their lives. Navigators are the catalyst to connect them to these tools of support to help them recognize they are never alone, and that they are certainly capable of continuing to move forward along their journey, however they choose to.

Due to the very nature of CNS tumors, especially those located within the brain, the patient’s cognitive and physical functionality may cause lasting effects that alter the individual’s personality, independence, and ability to perform simple activities. Often these changes are lasting and carry continued decline as time goes on. This requires the navigator to educate their patients and caregivers about potential changes to be aware of and ways to keep their treatment team informed of potential interventions needed to ease the impact of these changes on a day-to-day basis. It is the navigator’s responsibility to empower their patients and their loved ones to advocate for themselves and encourage open communication between them and their multidisciplinary team.

By empowering, advocating, educating, and supporting patients and their caregivers wherever they are in their treatment journey, the neuro-oncology navigator solidifies the importance of this role as a member of the multidisciplinary and supportive team. It is through navigation services that our patients and their loved ones experience improved outcomes, increased satisfaction, and overall higher confidence in the guidance and treatment received from their healthcare team.

As the field of neuro-oncology continues to evolve and the need for cutting-edge therapies grows, the need for exploring clinical trials and alternative therapies is also on the rise.

As the field of neuro-oncology continues to evolve and the need for cutting-edge therapies grows, the need for exploring clinical trials and alternative therapies is also on the rise. One resource that aims to support primary brain tumor patients who are interested in accessing therapy options that may be appropriate for their specific needs is www.braintumornetwork.org.

The Brain Tumor Network (BTN) offers personalized high-touch navigation for both patient and caregiver alike and is the leading resource for neuro-oncology patient navigation. The mission of BTN is to help patients learn of potential clinical trials that appropriately align with where they are along their treatment journey, access second opinions, expand their understanding of their diagnosis and current treatment options, as well as access a wide array of social care services that can assist at any point along the diagnosis trajectory, all at no cost.

BTN’s services are unbiased and not affiliated with any healthcare institution. Nurse navigation and social work navigation services are available to the individual and those who love and support them regardless of where they are in their brain tumor journey. BTN is committed to help the neuro-oncology navigator’s reach to empower patients and caregivers to access competent and coordinated care in whatever way they need it most. If you are a navigator who supports primary brain tumor patients and would like to connect with BTN to learn more about neuro-oncology navigation, please reach out toll-free 1-844-286-6110 or via email at This email address is being protected from spambots. You need JavaScript enabled to view it..

I truly hope you gained a better understanding of the complexities of neuro-oncology navigation and found at least 1 tool that you can utilize in your own practice as you serve your patient population.

Thank you for taking this journey with me, and for the care and understanding you bring to each patient interaction.