You’re sitting in the office of a neurosurgeon, and they’ve just given you the news: You have a brain tumor.
Or maybe you’re weighing treatment options and trying to decide what’s best for you and your family.
Or maybe you’re past all of that, and you’re three months post-surgery and trying to cope with your new life.
While these are all very different stages of having a brain tumor diagnosis, they can each be overwhelming in their own way. And during each phase, you may have questions, need extra care, or you may simply need someone to talk to. A brain tumor social worker can be there each step of the way, from diagnosis to recovery.
Brain tumor social workers can help patients with any type of brain tumor, whether it’s benign (non-cancerous), metastatic (a tumor that spread to the brain from another part of your body) or glioblastoma (an advanced cancerous tumor).
Arbena Merolli Trettin, MSW, Manager of Patient Affairs and a brain tumor social worker at Penn Medicine’s Department of Neurosurgery explains that brain tumor social workers can help patients with any type of brain tumor, whether it’s benign (non-cancerous), metastatic (a tumor that spread to the brain from another part of your body) or glioblastoma (an advanced cancerous tumor).
Brain tumors can change your life, and there’s no reason you should go through that alone. Here are 5 ways a brain tumor social worker can help you cope with your brain tumor.
1. They can help you understand — and cope with — your diagnosis.
The minute you’re told that you have a brain tumor, your life changes in an instant. You may feel anxious, scared, confused — and that’s all normal. A brain tumor is a complex diagnosis, and it can mean many things. “It’s a whirlwind,” Arbena says. “It’s a lot to take in initially — and you’re just trying to get through what needs to be done.”
What needs to be done can mean many things — surgery, chemotherapy, rehabilitation, emotional support. Fortunately, it’s not your job to try to understand how to get started.
“We’re here to help you, whether it be trying to understand your medical plan or sitting and talking about what’s happening and how difficult it is,” Arbena says, highlighting the many emotions you might be experiencing for the first time.
For a brain tumor social worker, this isn’t their first time with a brain tumor diagnosis. Nothing is going to surprise them — and they know what the next steps may be
2. They can work with you to choose the best treatment for you.
Once you understand the diagnosis, many people do what they do best: scour the internet. But Arbena says that may not be the best way to start understanding treatment options.
“The statistics about brain tumors can be upsetting — but there’s so much research being done, both here at Penn and in other medical institutions,” Arbena says. “The research is changing the way brain tumors are treated every day.”
Brain tumor treatment can range from medications (such as steroids) to radiation therapy or chemotherapy to surgery. The type of treatment that’s best for you will depend on many factors, including your overall health, the type and location of your tumor, and how likely the tumor is to spread.
No one knows those options better than your medical team, which includes a brain tumor social worker who will support you in making important decisions. “You have to have all of the information available first — all of the options. You should feel confident in moving forward with that decision, as well as have confidence in your medical team,” Arbena says.
Brain tumor social workers work closely with your brain tumor team, which includes neurosurgeons, nurse navigators, and nurse practitioners, to help you make these important decisions.
Arbena says that at Penn, her role is very supported and respected. “At Penn, the medical team acknowledges and respects the importance of social work in fully treating a patient,” she says.
3. They can help you with the emotional side of having a brain tumor.
A brain tumor may be a physical diagnosis, but it can also take a toll on your emotions. As you learn about your condition, go through treatment, and recover, it’s natural to feel a wide range of emotions — from fear to confusion to relief that you’re getting treatment.
Arbena says the emotional impact often starts to hit patients once treatment is underway. “Patients begin to face new issues as they continue coping with their new normal. This is especially true at the end of treatment,” she says. “The emotional healing takes a front seat when treatment ends. The goal then becomes moving forward and your quality of life — getting back to what’s important to you.”
The good news is that you’re not alone. A brain tumor social worker can help you work through those feelings and cope with the changes you’re experiencing.
Support groups can also allow you to connect with other patients who are going through a similar situation. Arbena leads the brain tumor support group at Penn, where she says patients are realistic and supportive of one another.
Patients talk about their struggles and the experiences they go through, but keep things light, too. “It’s amazing to me how they make each other laugh. They empathize and support one another, while still managing to find the little bit of humor in things. It’s truly beautiful to see all the love that is present,” Arbena says.
These support groups consist of all types of patients — young, old, men, women, family members — all finding ways to cope. “Whenever I’m leading a support group, I remember how honored I am to be a part of my patients’ lives,” Arbena says. “I can see their strength, their vulnerability, their friendship, their ability to care for one another in offering hope.”
Encouragement is a big part of the support groups, too. Arbena recalls a patient who is a 12-year survivor of a glioblastoma (an advanced cancerous brain tumor). He has been attending the support group since it began in 2008. “He often says to a new patient joining the group for the first time, ‘I’m here to show you if this (being a 12-year survivor) could happen to me, it can happen to you too,’” Arbena says.
Your physicians are well-equipped to take care of your physical needs. It can be a relief to allow your social worker — and maybe a support group — help you take care of your emotional ones.
4. They can be there to help discharge you from an inpatient setting.
You’re going home — now what?
While this can be an exciting stage for you, it can also be overwhelming. Whether you were at the hospital for surgery or other treatments, you had medical professionals there for you every hour of the day. Now, you’ll be more independent, and a brain tumor social worker can help you navigate that successfully.
A social worker can assist with:
- Financial issues, from applying for grants to Social Security Disability
- Insurance issues
- Home care needs, including services within your home and any durable medical equipment
- Obtaining support and counseling services
- Transportation, such as how you’re getting home or how you’ll get to and from treatments
There are also plenty of programs that your social worker can refer you to — like yoga and nutrition — that are there to help you keep your overall health strong as you recover.
5. They can help your family cope.
While it may sometimes feel like it, a brain tumor diagnosis doesn’t just affect you — it affects your loved ones, too. They have watched you — someone they love — battle a brain tumor, and they’ve cared for you through it. And that can be emotionally exhausting.
Caregivers are trying to keep the ship afloat. They’re continuing to work and care for their loved ones, which can be very difficult — both physically and emotionally. Arbena says, “Supporting someone who has a brain tumor can be challenging, and often the caregiver will need their own support system.”
Social workers can help your loved ones navigate this difficult time, and they can also refer them to support groups with others who are experiencing similar concerns, such as safety and support.
Life After a Brain Tumor
There’s no denying that a brain tumor is an overwhelming diagnosis. A brain tumor social worker will help you get through it and get back to living your life.
“We want to get you back to living your life — enjoying the things that you did prior to your diagnosis,” Arbena says.
Getting back to that place isn’t easy, but with the support of a brain tumor social worker, you may find that it’s possible.
Do you still have questions about what a brain tumor social worker can do for you? Call 610-431-5000 to speak with a brain tumor social worker to find out more about what they can help you with.