The diagnosis & plan: grade 2 astrocytoma, radiation & temozolomide
This graphic about my current diagnosis is based on the niche Internet meme, "Wait, it's...?"
Last week I received final details about my pathology, biomarkers, and results from the UCSF cancer gene panel, all of which inform my official brain tumor diagnosis and treatment plan for the foreseeable future.
The TL;DR
I still have a grade 2 astrocytoma (a malignant brain tumor aka brain cancer). This is still technically slow growing. This is great news, however if the last few months tell us anything, despite pathology and all the science my tumor is not behaving like other grade 2 astrocytomas. This is what continues to worry us but we take the positive and move forward.
Treatment plan
My treatment includes a combination of experiences both new and old for me. The plan is as follows:
I begin targeted radiation to my brain on June 15. The radiation schedule is rigorous and looks like a full time job running five days a week for six weeks. It takes a village to care for me. I am unable to drive and many people in my local community have stepped up to help me with transport (and/or donated Lyft gift cards), and for this I am truly thankful.
After that we let my body rest for four weeks. Somewhere in here we go see my neuro-oncologist, get an MRI, and see how my brain is doing. From what I understand, during this break my brain will continue to feel the side effects from radiation and I will be both physically and cognitively fatigued. That said, the brain is complicated and people I know in the brain tumor community report feeling a range of functioning during radiation from complete exhaustion to feeling pretty decent and going back to work, albeit at reduced schedules. We will see what works for me.
After radiation I begin chemotherapy for six months. The frontline (and only) chemotherapy drug for people with brain cancer is temozolomide. I have taken this drug before—for 24 months, in fact, back in 2009-2011. The good news is I have an understanding of how I may feel on this chemotherapy drug and know what to expect… somewhat. What’s new is I that have never taken this drug after radiation therapy and will likely feel much more fatigued throughout chemotherapy.
What does my medical team think?
My neuro-oncology team continues to be “pleasantly surprised” my diagnosis remains the same after 14 years. When scans in April showed tumor progression they were “significantly worried” my tumor had progressed to a grade 3 or 4 astrocytoma.
When my neuro-oncologist delivered the news to me last week that I was still a solid grade 2 astrocytoma, I asked how surprised they were that the diagnosis remained the same. They repeated they were worried my tumor had undergone molecular changes and were pleasantly surprised by my current situation.
I pushed further: “But really, if you had to assign a percent guess on what we were looking at this time around, what would you have guessed? A 50% chance of grade 4 astrocytoma? An 80% chance?” I could tell they didn’t want to answer this question.
I asked again, “In light of the current, positive situation—knowing things can change in a few months’ time—what was your guess anyway?” Realizing I was was going to continue with this line of questioning, they told me their guess. I nodded and felt really lucky.
Most people with grade 2 astrocytoma eventually progress to grade 3 or 4 astrocytoma. Tumor progression in these cases have no exact timeline, but I’ve heard 5-7 years thrown around. We’ve continued to monitor my tumor over time knowing that one day we’d catch growth on a scan—as we did in 2009, 2021, and 45 days ago. We might even see progression by the time I am done with radiation.
I have been living with this diagnosis for 14 years and know I am truly pushing limits and luck.
Final thoughts: neuroplasticity (yay!) and the pandemic (boo!)
There are two factors I am balancing with this recovery: right-sided sensory loss as a result from neurosurgery, and a global pandemic.
Sensory loss
As a result of neurosurgery, I have a loss of sensation in my entire right side, most significantly in and around in my right leg and foot. Simplified: my right leg doesn’t really know where it is in space.
The biggest problem this presents is that I am unable to safely drive a car as I can’t feel nor distinguish the difference between a gas and break pedal. I had these same issues after my last surgery, but the decrease in sensory loss has intensified. Fortunately, after four brain surgeries I believe in the power of neuroplasticity and am positive I can figure out a plan to regain functioning. Similar to my last surgery, I will be designing a customized plan to figure out how I can heal from and regain functioning.
Pandemic
Lastly, I am annoyed to be reliving the brain cancer experience in 2022, when people appear to have forgotten we are still in a global pandemic. I am fully vaccinated and have received two booster vaccines, and I live in an area of the country where more people have received their first two vaccinations. However, the vaccination rates in this country are dismal considering the accessibility of vaccines.
In early May I flew to Boston to see my colleagues in person for the first time in more than two years. I was saddened by the number of people who were not masked in the airport, nor on the plane, nor in public in general. Even though it was annoying to wear a mask for the entire trip I knew it was the right thing to do—not just for me, but for those around me.
To all who know me: get vaccinated, get your boosters when eligible, wear your masks when indoors in public, and wash your hands because its good public health in general (pandemic or not).
To all of my blood relatives who are not yet vaccinated: I hope you reconsider your decisions about health and science and consider getting a COVID vaccine. If not for you or the health of individuals who are immunocompromised like me, but maybe for me because I haven’t seen you in more than two years and I will continue to not see you until you do so.
