One of the things I’ve struggled with throughout my mom’s treatment is working within the borders of “Standard of Care.”
Standard care for Glioblastoma and most cancers aren’t pretty or precise. There are only a few tools at the doctors’ disposal to treat patients (surgery, chemotherapy, radiation, and some variations in between), and, as in the case of GBM, none of these tools will lead to a patient being cured. As the weeks passed, I could guess what my mom’s doctors were going to say when we walked into their offices. Her doctors could only go through an approved treatment checklist that laid out loud and clear our limitations with cancer care. It’s no one’s fault, but I recognized that we were marking off a checklist that only runs so long.
I read about the Novocure Optune device in a New York Times article while researching other treatment options. It was recently approved by the FDA, and while it’s not “standard of care” yet for GBM patients, it seems to be well on its way. When I asked her doctors about this, they had no idea what I was talking about. I’m being literal. One doctor looked me dead in the eye and said, “I have no idea what you’re talking about,” topped it off with an awkward three seconds of silent eye contact. I might as well have asked if he heard about moon beans curing cancer and if he could help me retrieve them at the end of the rainbow.
What gave me confidence was when mom texted me about seeing something on the local news that sounded similar to what I talked about. She sent me a video of what she saw—and wouldn’t you know, it was Optune. You have to go through an approved doctor to get prescribed Optune, and the closest ones were at USC Norris Cancer Center. Unfortunately, none of the doctors there were under my mom’s insurance network. After more than a dozen calls to her insurance company, and talking with USC’s new patient referral team, I gave up on trying to get approval. After sitting on the idea for a few weeks, and receiving the news that an MRI showed that my mom’s tumor had stayed the same size, I decided to go ahead and pull the trigger on going there out-of-pocket to talk about Optune, clinical trials, and to get a second opinion from Naveed Wagle, a neuro-oncologist there. At the same time, I sent my mom’s records to the neuro-oncology center at UCSF for an over-the-phone second opinion consultation.
This morning while walking to my mom’s house to leave to USC Norris, I got a call from UCSF with their second opinion. Their opinion was: schedule surgery soon to remove the recurrent tumor, clean out the swelling edema around it, and after recovery, jump right into 280mg chemotherapy treatment (her first round of chemo after her initial surgery was 140mg). The doctor spoke with urgency. I was nervous. I relayed the information to my mom and told her we should make our decision after we visit USC.
We met my friend Gloria who works at USC, chatted for a bit, and met with Dr. Wagle about an hour after arriving. My mom was just past the point to qualify for any clinical trials, but after reviewing her records, his opinion was that the treatment plan we were about to embark on (280mg of chemo for five days every 28 days) was the right one, and he didn’t recommend surgery at this point. When I brought up what he thought of Optune, he didn’t flinch. Wagle knew what I was talking about, and he prescribed for her.
When we got home, the impression between both of us was that we’d stay on course, regardless of how cold and hard it’s been. From my perspective as a caretaker, this felt like the most productive day we’ve had since this all began, even if nothing really changed other than the Optune prescription. We’re still on the same path, but there might be a little light in the distance.