Navigating Another Ependymoma Recurrence

Long-term survival means different things to different people. For folks in active treatment, long term might be six months or less. But for folks who are several years beyond treatment and learning to navigate life with a new perspective, long term is likely more of a concept that encompasses at least the foreseeable future.

Facing a Brain Tumor Recurrence After Years of Remission

So when a tumor decides to start growing again while a patient is in the midst of long-term survival, it can feel very much like an initial tumor diagnosis — surprising, unexpected, unwanted, anxiety-riddled, or any number of things. My reaction was primarily surprise. I was cruising through my 50s with a relatively clean bill of health and no symptoms of a recurrence — a full eight years since my last radiation treatment, when a routine MRI identified a tumor growing near my original tumor site. So I got to replay the conversation that so many have had: “Your scan shows something that shouldn’t be there.”

This is the second time my ependymoma has recurred. I have now had that conversation with a doctor three times. The second time, I was 10 years clear of my first surgery. This time, despite trying to stay vigilant, the years rolled by and lulled me into a false sense of security. I relaxed…again.

Before getting into how to address a recurrence, let’s acknowledge a difficult fact: there is not a lot of information about recurrence during long-term survival because there aren’t enough patients who survive more than five years. That’s one of the reasons that organizations like National Brain Tumor Society and CERN Foundation are critical – more research leads to improved treatment, which leads to longer survivorship.

Without enough previous cases to study, the progression of thought above represents a solid foundation to approach recurrence. Treatment is evolving, surgical approaches are improving, pathology is more precise, and doctors and hospitals know more about brain tumors today than yesterday. And they will know even more by tomorrow.

How Biomarker Testing and Clinical Trials Are Changing Ependymoma Treatment

So regardless of how much time has passed since a previous incidence, be ready to embrace the new environment: be prepared to hear about your tumor’s biology, including biomarkers, mutations, and proteins; new ways to specifically target radiation are developing; clinical trials are exploring new treatments; medicines attack very specific aspects of tumor cells. My last recurrence wasn’t that long ago, but the entire landscape has evolved and improved.

Change can be uncomfortable – especially in medical settings – but I welcomed the new landscape. Treatments and care have improved…how could I accept that as anything but a positive? The lone drawback from my perspective is that there is a learning curve. But asking specific questions of your medical team that compares the new knowledge to how it used to be helped bring me up to speed fairly quickly.

In a constantly developing environment, it is important to recognize that a recurrence is not a previous diagnosis. A recurrence is a new event, in a new time, and it should be treated as such. With new information and improved techniques, treatments have evolved. I welcome such advancements and think of them as more arrows in my quiver.

Using Your Patient History: The Value of Past Scans and Pathology

And patients have an additional powerful improvement available – experience. What therapy was effective before? What area needed more attention? Is there a doctor or therapist who needs to be added to the care team?

Thinking of my last recurrence as a dress rehearsal is helpful. What did I learn from that experience? What would I change? Getting an opportunity to fight the fight a second or third time is a privilege that some patients never get. Take advantage of the chance by using information gained in prior incidences.

Comparing Past MRI Scans to Track Tumor Growth

Two specific aspects to use from your case history are scans/imaging and pathology. Regardless of how much time has elapsed, use imaging to build a clear picture of how quickly the tumor is growing, which direction it’s growing, and where it’s growing. Compare previous scans to get a clear understanding of how the tumor is behaving and impacting the surrounding tissue. And not to worry – you don’t have to do this effort on your own; your medical team should be building the picture with you.

The Role of Frozen Tissue Pathology in Precision Medicine

Like imaging, pathology done on previous tumors can be used to build a precise treatment plan. In many cases, tumor tissue is frozen and preserved for this reason. Even if a recurrence is growing in a different location from a prior tumor, pathology reports and frozen tissue can still be used to build a more accurate diagnosis for a recurrence. If tissue was preserved, a new biopsy may not be needed in order to gain new insights into how to treat a tumor.

In my case, previously biopsied tissue was, in fact, frozen and preserved. With the increase in specificity in a tumor’s cellular makeup, my medical team was able to use that tissue to test for an array of things that are determining my treatment plan, and whether any clinical trials were suitable.

Support & Navigation During a Recurrence

If all of the above sounds overwhelming, there is more good news…as doctors and scientists have learned more about brain tumors, like ependymoma, hospitals have developed and improved the patient experience. Case managers and social workers can help navigate the new landscape. Patients don’t need a medical degree to understand their case because there are folks on a hospital’s staff who are trained for the job.

A good example of the help available to patients is National Brain Tumor Society’s Personalized Support Navigation (PSN) team. In my case, a PSN member led me through a review of clinical trials and kept up with building my case as it developed.

About the only aspect of recurrence that isn’t different from an initial diagnosis is to advocate for yourself. Whether it’s a troubling symptom or anxiety, a patient is the only one who truly knows and understands how they feel. Patients should feel empowered in their own case. After all, a recurrence is your future health. Be involved, speak up, contribute in decision-making, and think of yourself as a centralized place that gathers information. Doctors, case managers, and financial counselors are all specialists delivering information — no one is better suited than the patient to combine all the information into a cohesive “case” that facilitates decisions.

My Personal Blueprint for Facing a Third Ependymoma Recurrence

No matter how many recurrences you’ve had, avoid the “here we go again” mindset! This is not “last time” – things are different, and there are improvements. Utilize new resources and lean on experience gained in prior incidences. Not many patients think of their initial diagnosis as helpful to them, but a recurrence is one instance where the experience gained is absolutely beneficial – use it! And combine it with a new landscape full of improvements and developments.

I am no expert, but I have plenty of real-world experience with brain tumors. This article closely follows how I have approached yet another recurrence: My tumor type is slow-growing, so my medical team decided to wait 90 days before getting a new MRI to compare to previous scans. During those three months, we tested tissue that was frozen after my second recurrence. With the new imaging and advanced cellular testing, my team favors starting treatment on this recurrence with a combination of two chemotherapy agents.

TAGGED WITH: Ependymoma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.