A brain tumor recurrence is one of the most feared possibilities for patients and caregivers alike. While no one can predict exactly if or when a tumor may return, there are important steps you can take now to feel more informed, emotionally prepared, and medically supported.
Here’s what you need to know.
Understanding Recurrence: Why It Happens
Some brain tumors are more likely to come back than others. Glioblastoma (GBM), for example, has a higher risk of recurrence compared to lower-grade tumors. But even tumors that were successfully treated in the past can return—sometimes in the same area, sometimes in a new location.
Factors that affect recurrence include:
- Tumor type and grade
- Genetics and molecular markers (like MGMT methylation or IDH mutation)
- Response to initial treatment
- Time since first diagnosis
Your care team can talk with you about your specific risk and how your tumor behaves based on clinical evidence.
How Will I Know If My Tumor Is Back?
Most patients are monitored through a process called surveillance, which includes regular MRIs and check-ins with your neuro-oncology team. But symptoms matter too.
Possible signs of recurrence include:
- New or worsening headaches
- Seizures
- Weakness on one side of the body
- Personality changes or memory issues
- Vision or speech problems
Always report new symptoms to your medical team—even if they seem mild. Your doctors will compare MRIs over time and assess any changes in how you’re feeling.
How to Emotionally Prepare for a Recurrence
No one wants to think about “what if,” but being mentally prepared can reduce fear and improve your decision-making if the time comes.
Here’s how to prepare without living in fear:
- Have open conversations with your doctor about what recurrence could look like.
- Learn about your treatment options ahead of time (surgery, radiation, clinical trials, etc.).
- Ask your care team what symptoms to watch for based on your tumor’s location.
- Build a support system of loved ones, caregivers, or support groups.
One patient at the ABTA National Conference said: “When I got the news that my tumor came back, I gave my doctor a hug and said, ‘Okay—what’s next?’ That moment of grace helped us both refocus.”
You Don’t Have to Decide Everything Today
In most cases, a recurrence doesn’t mean you must take action immediately. Unless it’s a surgical emergency (which is rare), you’ll have time to think, ask questions, and explore options.
Neuro-oncologists often follow frameworks like the NCCN Guidelines to recommend next steps, but every plan is personalized. A pause to process is always okay.
Key Takeaways
- Not all tumors come back—but it helps to be informed.
- Monitoring includes MRIs, symptoms, and your overall wellness.
- Talk openly with your doctor about potential next steps and options.
- Emotional readiness can help you respond, not panic.
- If a recurrence does happen, you are not alone—and you are not without options.
Looking for more resources? Check out the recording below from our 2024 National Conference (and sign up for this year’s National Conference while you’re there!), or explore past webinars, free educational booklets, and our multi-day/hour webinar series, Patient Family Meetings.
