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“We found a mass in your brain.” In one moment, life shifts from normal to a blur of scans, terminology, and life-altering decisions. Suddenly, you and your family are looking up at a mountain you never intended to climb, facing unpredictable weather and a trail that isn’t on your map.
Oncology social workers are highly trained guides who help families navigate the health care system. Their role is to alleviate the non-medical stressors, allowing patients and caregivers to focus their energy on treatment and what matters most to them.
“The social worker at the hospital was the person who guided all of the things,” said Amanda P., whose husband was diagnosed with glioblastoma.
Oncology social workers support the person and family living with a brain tumor by helping with practical resources to address the day-to-day impact the disease has on their lives, as well as advocating for patients and their families.
Laurenn Armstrong, LCSW
“Even though we may not be providing the direct service, social workers are a wealth of knowledge of what services are available in the community,” said Laurenn Armstrong, LCSW, a member of the patient support and navigation team at the National Brain Tumor Society, and former children’s hospital neuro-oncology social worker. “Social workers can help you tap into resources that you might not even know existed. Instead of trying to search Google for options late at night after a day of caregiving, your social worker can help pull those resources to save you time. You don’t have to do everything yourself.”
These licensed health care professionals bridge the gap between medical treatment and a patient’s social, emotional, and financial reality at any point after diagnosis.
“A big misconception I saw is that people would automatically assume something was wrong when they saw a social worker come into their room,” Laurenn said. “In reality, I like to tell people social workers are a resource for everybody — not only when things are going wrong.”
Haven’t met a social worker yet? Ask your medical team to be referred to one! If an oncology social worker is unavailable, a general hospital social worker who covers multiple units or even the entire hospital may be an option. In situations where access to a social worker is unavailable, the hospital may have a nurse navigator or case manager who could provide support. A care team member may also be able to provide local or community resources that offer patient navigation, such as NBTS.
Check out these 13 ways oncology social workers can support people living with brain tumors and their loved ones.
Note: While some health systems have dedicated neuro-oncology social workers, we will use the broader label “oncology social worker” throughout this blog post.
1. Answer non-medical questions
The mental load that comes with a brain tumor diagnosis may feel overwhelming, as a patient is faced with so many unanswered questions at once.
“I think sometimes when things are going as best they can, it’s hard to know what to ask,” Laurenn shared. “Anything that’s not medical, ask a social worker. If they don’t know the answer, they’ll figure out who does. It’s a lot more efficient than the patient or caregiver trying to figure it out.”
Understandably, newly diagnosed patients want to bring all of their questions to the first health care professional who treats them, often their neurosurgeon.
“We often see that someone will ask their neurosurgeon a question, but it’s really a question that should be directed to a social worker,” said Katherine Pahler, NBTS’s Patient Navigator.
2. Search for financial assistance
People with brain tumors may face financial challenges due to the loss of income from their inability to work in the midst of significant medical expenses.
“Connecting with a social worker or services can help people navigate [their] health insurance [and] some of the financial implications as well,” said Ashley Ghiaseddin, MD, chief of the division of neuro-oncology in the University of Florida’s Department of Neurosurgery. “Maybe there’s loan forgiveness for students or other things that they may not be aware of, but they really need someone who can champion for them to make sure that they’re thinking of those opportunities that are there to help and support them.”
Oncology social workers can help connect patients to organizations that provide financial assistance, including foundations that offer one-time grants to cover rent, mortgage payments, utilities, medication, or other expenses.
“One of the primary benefits of working with a hospital social worker is their ability to bridge the gap to essential resources,” Laurenn explained. “In my previous role, I frequently distributed gas gift cards or cafeteria vouchers to ensure that patients coming in for weekly treatments didn’t face the added burden of daily meal costs. It’s about providing that immediate solution when it’s needed most.”
Oncology social workers are also knowledgeable about financial assistance programs offered by pharmaceutical companies for patients taking their medications or using their devices, whether for the patient’s treatment or medications that address side effects and symptoms. These programs may include free-trial offers, co-pay savings, insurance coverage assistance, coverage interruption support, and more.
Other examples of how oncology social workers can provide assistance include:
Writing letters to landlords or leasing companies to explain what the patient is going through and requesting flexibility, such as a payment plan
Filling out a form for the power company to state that the patient’s power cannot be turned off due to the patient being on oxygen
Searching for affordable housing if the family needs to move to a more accessible living situation
Recommending local food banks and organizations that could provide grocery cards
3. Help individuals advocate for themselves
Oncology social workers act as vital advocates between the medical team and the family. They often serve as an objective third party, allowing them to read social cues and intervene when high-level medical jargon becomes confusing, so the patient understands what the neuro-oncologist is saying.
While every hospital is different, sometimes it’s the oncologist who asks the social worker to join an appointment, and other times it’s the patient or their family who requests a social worker’s presence. Laurenn encourages patients and families to ask, after diagnosis or early in treatment, whether a social worker is available to provide support during clinic visits.
Advocacy also means ensuring the treatment plan is actually sustainable for the family’s specific life circumstances. For instance, if a family lacks reliable transportation or lives hours away, a social worker can step in to negotiate more accommodating options.
Laurenn said, “For example, if I knew they didn’t have reliable transportation, I would ask the neuro-oncologist, ‘Do they have to come to this clinic, or can they go to a local clinic for this instead of coming all the way from where they live, three hours away?”
This advocacy extends to the workplace as well. While the oncology social worker likely won’t speak directly to an employer, they can empower the patient to have conversations about returning to work, including recommending questions to ask their HR department or providing information about the Family Medical Leave Act (FMLA) or state medical leave, if available.
“I think people are scared of the unknown, so they think of what their life looked like before the diagnosis, and they know that they can’t go back to that,” Laurenn said. “So they think it’s just not possible to go back to work, but I think a lot of times employers are more flexible and accommodating. It’s just a matter of asking.”
4. Take notes during appointments
Another way oncology social workers can provide support is by taking notes when a patient’s cognitive abilities are affected by surgery or treatment. By sitting in on appointments and writing things down, they ensure the patient leaves with a clear record of the conversation to share with their loved ones.
“When I wrote things down for patients coming by themselves to the clinic, they had a paper with what was talked about to then relay to their family and have for their own personal reference,” Laurenn said.
Krista D-L. learned of her daughter’s ependymoma diagnosis in a hospital consultation room. At a time when it felt like the floor was falling out from under her, a social worker took detailed notes for Krista to reference later.
5. Clarify health insurance matters
Health insurance policies are full of terms like deductibles, out-of-pocket maximums, and prior authorizations. Some health systems have a financial navigator who can sit down with a family to explain exactly what their specific plan covers and, more importantly, what it doesn’t, so there are fewer surprises when bills arrive.
In health systems without financial navigators, it’s often the oncology social worker who steps in. When a health system has a financial navigator, it’s typically the oncology social worker who refers the patient to them.
If a patient arrives without insurance, a social worker’s first priority is finding a safety net. They are experts in eligibility screening, helping patients determine if they qualify for Medicaid, COBRA, or a marketplace plan.
6. Secure transportation and lodging
The logistical burden of brain tumor treatment is often one of the most stressful impacts on families. Oncology social workers are experts with local and national transportation and lodging resources to ensure that a lack of transportation or a long distance from the clinic doesn’t become a barrier to care.
Whether it’s connecting patients with a local organization or service or providing gas cards or vouchers for rideshare services like Uber and Lyft through local partnerships, oncology social workers act as the link between these programs and the patient, often handling the paperwork required to verify eligibility.
“For example, in Indianapolis, there is a local organization that provides free rides for patients; for those outside the immediate area, they offer gas cards mailed directly to the home,” Laurenn said. “To access these resources, I worked as a liaison, providing the necessary treatment schedules and physician certifications to verify that the patient is currently undergoing active cancer treatment.”
“If your treatment center is three hours away from home and you’re getting daily radiation, a social worker can help you find temporary housing,” Laurenn said. “At some hospitals, the Ronald McDonald House is available for pediatric families, but there are also other similar organizations for adults, like the Fisher House Foundation for veterans and Hope Lodge, where a social worker can help the family fill out the application to secure temporary housing.”
7. Provide emotional support to caregivers and families
While the medical team focuses on treating the tumor, the oncology social worker focuses on treating the person and their entire family. Brain tumors often bring a unique set of emotional hurdles, from personality changes to scanxiety to fears of recurrence.
“When it comes to the conversations about a diagnosis or a recurrence, social workers can help with the emotional side of things and provide coping strategies,” Laurenn said. “I would do a lot of check-ins on how the caregivers are taking care of themselves and provide support to them.”
Oncology social workers can come alongside patients and their families to recommend local in-person support groups, virtual support groups like the National Brain Tumor Society’s Brain Tumor Support Conversations and Caregiver Support Conversations, and local counseling options.
“If they’re still working, a lot of employers offer employee assistance programs (EAP), but many people don’t know about this option,” Laurenn said. “Social workers can provide that short-term support in the clinic, but they also work to make sure that patients and caregivers have support resources available when they’re not in the clinic.”
8. Dispense paperwork support
The administrative load of a brain tumor diagnosis — ranging from insurance claims to financial aid applications — can feel like a second job for the patient or caregiver. Oncology social workers act as navigators to simplify the process.
When applying for assistance or grants, many foundations actually prefer to work through a social worker rather than directly with the family to streamline the process and may even require social worker verification. By handling these requests, the social worker ensures the foundation receives what it needs without having to reach out directly to the family.
“I would fill out the application with the family in the clinic and get that required letter or documentation, and I would submit it to ease the family’s burden,” Laurenn said.
However, for government programs such as Medicaid, Medicare, or Social Security Disability Insurance (SSA), social workers can only provide support because these programs require the patient or legal representative to complete the paperwork. For example, a social worker can help print the address and hours for their local Social Security Administration office and obtain the necessary medical records or physician letters to accompany the application, but the patient must complete and file the forms.
9. Plan for the future
Planning for the future is perhaps one of the most significant yet difficult conversations a family can have following a brain tumor diagnosis. In an ideal scenario, oncology social workers aim to ensure the patient’s voice is heard and documented before any potential crisis arises.
Because a brain tumor diagnosis impacts every facet of life, the support a patient needs is often dictated by their current life stage. Oncology social workers are trained to identify the specific stressors associated with being a student, parent, or retiree, and to provide targeted resources for their unique circumstances.
Children & Adolescents
For younger patients, the priority is often maintaining their educational and social trajectory. Social workers act as a bridge to the school system, providing the necessary documentation to secure Individualized Education Programs (IEPs) or 504 plans. They can recommend accommodations like modified schedules or “home-bound” instruction and help the family navigate their child’s return to school after treatment.
Young Adults
Young adults in their 20s and 30s encounter a distinct set of challenges as they navigate major life transitions like finishing their education, starting their careers, and navigating personal relationships.
Social workers can provide young adults with fertility preservation options and connect them with financial assistance to move forward with these options before treatment begins.
For those trying to grow their careers, social workers offer coaching on how to communicate with HR about returning to work and the type of accommodations they may need to succeed at work.
Adults
In the middle stages of life, individuals in the “sandwich generation” often find themselves caring for both their children and aging parents while managing their own diagnosis. Social workers help these patients navigate disability insurance, prevent medical bills from depleting their retirement savings, and more.
Elderly
For older adults, the primary goal is often maintaining independence and safety at home.
“Every state is required to have a State Unit on Aging,” Laurenn said. “Most states then divide their territory into local Area Agencies on Aging (AAAs) to provide further support.”
Tapping into these resources is essential, as they can provide resources to make necessary home modifications, provide respite care, and obtain free meal delivery like Meals on Wheels.
11. Navigate end of life
Oncology social workers can help patients and their loved ones move from a focus on medical treatment to a focus on comfort. They assist with big decisions, such as whether it is better to stay at home for care or move to a hospice facility. Their main goal is to make sure the patient’s wishes are respected while the whole family feels supported.
“If you have children and are trying to explain what’s happening to their sibling or parent, a social worker could provide those resources, whether it’s books or the language that they could use.”
Social workers can also help families with memory making, creating special keepsakes to honor their loved ones and give family members something to hold onto forever. While the specific activities might change based on a person’s age, the goal is to capture the essence of a person and the love they share with others.
Examples include:
Handprint and fingerprint jewelry or art
Voice-recorded books
Memory bear or stuffed animal
Curated playlist
Video messages or handwritten notes for important milestones
Collection of recipes
Digital photo archives
Oral history recordings
Family tree mapping
Photo session
12. Suggest fun and meaningful experiences
Brain tumor treatment can feel like it takes over every part of life. Because of this, oncology social workers look for ways to bring joy and normalcy back to a family’s routine. They understand that a break from the hospital is not just a luxury — it is a way to recharge and feel like a person again, rather than just a patient.
Social workers often keep updated lists of local and national groups that specialize in creating these meaningful experiences for families. They’re also usually the ones who start the process with organizations like Make-A-Wish. They help confirm that the patient meets the medical requirements and handle the initial referral paperwork.
However, their help is not limited to big wishes. They also look for smaller, everyday opportunities, which might include finding tickets to a professional sports game, a theater performance, a local museum, or a theme park.
By focusing on these positive moments, social workers remind families that life is still happening alongside the diagnosis. They help create long-lasting memories that provide much-needed hope and strength during the difficult days of treatment.
13. Attend a brain tumor board
One way an oncology social worker may support the brain tumor community behind the scenes is by attending a brain tumor board. This is a special meeting where a group of different neuro-oncology experts come together to discuss a patient’s case and decide on the best treatment plan.
During these meetings, the oncology social worker can share what they know about the patient’s personal goals and values. For example, if a patient’s top priority is to remain independent or to be well enough to attend a family wedding, the social worker makes sure the doctors consider those wishes. They advocate for a plan that doesn’t just treat the tumor, but also fits the patient’s real life.
Social workers also use these meetings to highlight barriers to care. These are life challenges that make it hard for a patient to follow a medical plan. If a patient lives far from the hospital, lacks a reliable car, or is struggling with memory issues, the social worker can raise those concerns. By pointing out these hurdles, they help the medical team create a realistic, patient-specific plan.
Patient & Care Partner Resources
Being diagnosed with a brain tumor or caring for someone with a brain tumor can be a challenging and stressful experience in many ways. Fortunately, there are resources available to assist people with brain tumors, their families, and their care partners in navigating these challenges. NBTS’s Personalized Support & Navigation Team includes nurses and a licensed social worker who direct patients and caregivers to resources tailored to their unique circumstances.
