Why Biomarker Testing Can Change a Brain Tumor Diagnosis

Carmen Caffey, a nurse and mother of two in the Kansas City metro area, was four months postpartum when seizures led to the discovery of a brain tumor in July 2025. Early pathology pointed toward a high-grade glioma, most likely glioblastoma, and she began standard treatment. Months later, biomarker testing changed her diagnosis to ependymoma, a type of brain tumor that starts in cells lining the brain’s ventricles and the spinal column.

In an interview with CURE, Caffey discussed the weeks after surgery, how test results and tumor samples can get lost between hospitals and what patients and care teams can do differently.

This interview has been edited for length and clarity.

How was the brain tumor first found?

Caffey: I was four months postpartum with my second son, and I started having seizures while I was prepping for a party in my kitchen. Thankfully, my husband was home and was able to call an ambulance. At my local ER, they did a CT and an MRI and found out I had a brain tumor. Three days later, I had a craniotomy to take it out. The initial testing showed it was histologically grade 4, so we thought I probably had either a grade 4 astrocytoma or GBM [glioblastoma], and I started the Stupp protocol [of chemotherapy and radiation]. During the chemoradiation, NGS [next-generation sequencing] results came back that didn’t align with either astrocytoma or GBM. Whole genome methylation testing by the NIH [National Institutes of Health] showed I mapped with high confidence to a ZFTA fusion. A fusions-only NGS test confirmed it, which changed my diagnosis to ependymoma. Now, I’m monitoring with quarterly MRIs.

What were the first weeks after brain tumor surgery like?

When I first met my neuro-oncologist and radiation oncologist, I was experiencing basically psychosis from extreme lack of sleep. I had been on the steroid they give you for brain swelling after surgery for about a month, and I could not sleep. I’d forget where I was or who I was. Thankfully, my husband was able to be my caregiver and process a lot of the information, because I was not capable of doing it at that time.

I also had to stop breastfeeding pretty much overnight because of my medications. Then I started looking up the prognosis. The prognosis for GBM is roughly 12 to 18 months, so I’m thinking, are my children likely to remember me? I’m working on my own medical care, but I’m also setting up my will. There’s a lot of grief and fatigue and sadness.

How did the brain cancer diagnosis affect parenting two young children?

My oldest was two and a half, so he was only capable of understanding so much. It was mostly about being aware of the anxiety of all the adults, how that anxiety was affecting him and maintaining as much normalcy for him as possible. He was scheduled to start survival swim lessons, and my family volunteered to take him every day because I was in the hospital. I turned 35 during that stay, and my family made a birthday party where he got to celebrate and visit me. We were trying to make those moments still feel significant to him.

How was biomarker testing for a brain tumor explained?

Testing was initiated at the hospital where my neurosurgery took place. They didn’t have a neuro-oncologist, so I transferred my oncology care to a second hospital, and all the results had to go there. Even with a nursing background, I was not able to learn things during that period. My husband looked up research papers and did a deep dive, and he would advise me. He’s my durable power of attorney for health care, and I trusted him to make a good decision.

It’s important to have conversations with your caregivers ahead of time about your priorities, to have a durable power of attorney for health care or advance directives if possible, and to make sure your health care team puts as much effort into educating your caregivers as into educating you. During recovery, it’s hard to be the primary learner.

Why can biomarker test results for brain tumors be delayed?

For me, the barriers were not in getting the tests ordered or paid for. The trouble was the logistics. As a patient, you know testing is being done, but you don’t know who’s doing it, which tests are being run, when they’ll be reported or who they can be reported to. When I called testing agencies, as soon as they knew I was the patient and not the ordering physician, they couldn’t tell me my results. There are complex legal reasons for that, like licensing across states, but it still causes delays.

My fusion test, the final test that changed my diagnosis to ependymoma, was written the first week of October, but neither my neuro-oncologist nor I received it until mid-December. It was lost in inter-hospital communication. I finally got the doctor who ran the test on the phone, who said they couldn’t tell me the result but could tell me the date they reported it. I called my hospital with that date, and two days later, I had the result. I recognize I’m probably in a better position to advocate for myself than some patients because I have a master’s degree in nursing. A lot of patients probably fall through the cracks.

Why does tracking a tumor sample matter for patients with brain cancer?

My tumor moved from institution to institution for NGS testing, methylation testing and fusion testing, and I had no transparency about where it was, where it was going next, how much was left or what state it was in. I was trying to track it down because I wanted to pursue an immunotherapy available through Germany, and people often need a piece of their tumor for a clinical trial or additional testing. When I called the pathology department, they said they couldn’t disclose that to me, the patient. At the end of the day, all of the information about a tumor needs to be available to the patient, and everyone involved needs to be accountable to the patient.

How did the ependymoma diagnosis change treatment?

I had already completed my course of temozolomide, and for ependymoma, there’s very little evidence that temozolomide helps, so the cyclical rounds of chemo were put on hold. Ependymomas can spread within the whole central nervous system through the cerebrospinal fluid, so we did an MRI of my whole spine and a lumbar puncture to check for malignant cells and inflammatory markers. Thankfully, all of that was negative, and spinal MRIs were added to my monitoring. Clinical trials are discussed, but there are no targetable biomarkers in my profile, so there aren’t any trials likely to improve my outcome at this time.

What questions can patients with brain tumors ask about biomarker testing?

I would make a list. What tests are being done, and why? Are there tests we should consider that we’re not doing? Are there alternative diagnoses we should rule out? I would also ask about cost and availability. I was lucky to have insurance that covered all my testing, but not everybody does. Testing also comes with uncertainty. Maybe a result points to a drug or a trial, and at some point, you have to make a leap in one direction. That doesn’t mean you shouldn’t do it, but understand that it’s part of the process.

What is life like after a brain cancer diagnosis changes?

I’m doing pretty good. I’m a little over a year post surgery with no recurrence. My tumor was between my speech center and motor cortex, so we anticipated difficulty with speech and movement, but that didn’t happen. I sometimes have trouble finding words or remembering names, but most people don’t notice.

I thought I had GBM for about six months, so there’s a certain amount of optimism to having an ependymoma. But people ask what I’m going to do to celebrate, and I don’t want to celebrate that I have brain cancer, because I still have brain cancer. It’s bittersweet good news. A lot of people with GBM are hoping and praying for a result like mine, and I don’t want to be insensitive to that, but it still sucks to have cancer.

How can care teams better support patients after a brain tumor diagnosis?

My story shows that access to testing isn’t the end of it. Patients need practical information about when, how and where testing is done. I’ve also talked to many patients who have trouble getting biomarker testing recommended at all, getting coverage or navigating language barriers.

Even with excellent education, a patient may not be in a place to receive it right after diagnosis. Care teams should check what support the patient has, who else can receive the education, when to circle back and what resources, like those from professional societies that support patients with brain tumors, the patient can return to later. I would also highly recommend referrals to psycho-oncology pretty much any time it’s available.

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