"What's on your head?": Three ways to explain Optune®
By: Taylor, Optune patient
Interacting with the public
Coming to terms with GBM was difficult. I didn’t want to admit I had brain cancer. Accepting my diagnosis and learning to talk about my condition was an important part of the process of moving forward. Although I struggled to accept and explain GBM, talking about Optune was easier—and I discovered how to explain it in different ways to different people.
“I admit that when I first began using Optune, it was hard to get used to having something attached to my head. I had to be prepared to leave the house by making sure I had enough charged batteries to take with me for however long I'd be gone.”
I've always been a ball cap guy. I just had to get bigger hats. However, I don't try to hide Optune. I welcome the questions and conversations that people have about it. Within the first few weeks after I regained my independence using Optune, I had several people ask me, “What are you wearing?” They didn’t know what they were getting into! What they thought might be a quick answer turned into a 10-minute description of how Optune works!
People have asked me if I’m on oxygen, if I’ve had a concussion, if I have burns on my head, and many other things. Most people are really amazed at how Optune works. When I tell them, “it works by creating Tumor Treating Fields, which are electric fields that disrupt GBM cancer cell division,” they’re very impressed.
Impact on children
The hardest part was probably at the very beginning when I told my daughters about it. I was terrified to have those conversations with my daughters. My (now) eight-year-old understands what cancer is and how scary and serious it is. I was afraid that she would ask if I was going to die. Luckily, she hasn't. But if she did, I'd tell her that I'm doing everything I can to keep it at bay. I told my daughters that Optune is “a special hat” that I have to wear all the time to help with my brain cancer. They became my “special hat” helpers!
They’d keep an eye out to make sure that the cords on my “special hat” weren’t caught on something, like if I shut the cords in the car door. They also like to be my “battery helpers” when my alarm goes off. They take turns getting me a new battery from the charger and plug the dead one in.
Now that our daughters are a little older, I can explain in more detail what Optune does. I tell them it is a cool piece of technology that may slow down cancer cell growth in my brain by using electric fields.
I’m also a substitute teacher at a local middle school. My students are very curious about Optune and why I’m using it. They are sincerely concerned and that’s very sweet. I’ve had comments from “good luck on your journey” to “I hope you don’t die.” Initially, I was caught off guard. I thought, “Did he really just say that?” Then I realized he didn't mean it in a negative way. He was very sweet, just didn't phrase it very eloquently. Like I said, these kids are very sweet. I appreciate the opportunity to help teach them to not be afraid to ask questions and show empathy and compassion for someone with a medical condition.
Communicating with HCPs
I’m most surprised by the questions I received from people in the medical field. I realize that many healthcare professionals—even those who work in oncology—may not have had the chance to talk with someone who uses Optune. And I’m happy to spread the word about this treatment.
When I first heard about Optune, I didn’t consider what people might say or the questions they would ask. I’m grateful to share my story and increase awareness about it wherever I go.
Sometimes it can be awkward, but I’ve learned that most questions are well-meaning. Everyone—no matter their age or profession—is genuinely curious and impressed to learn about how Optune works.
Today I welcome the questions. Thanks to my friends, family, and even conversations with strangers, I have an appreciation for life that I didn’t have before my diagnosis.