In December my MRIs showed new cancerous cells where my tumor was located. It was a total surprise. From the point of learning about the new growth to now, a lot has happened medically.
December
The first week of December, the neuro-oncologist found what appear to be new cancerous cells in my brain. I was confused because the radiologist report said there were no changes from the scan 6 months before. In subsequent conversations, my neuro-oncologist explained and later showed me that the growth was most evident when the December 2023 scans were compared to scans from 2020. He described the cancer as “millimetering along.” In other words, there's been a very slow growth of cancer cells over the last 4 years. He suggested I see my surgeon and a radiation oncologist as soon as I could.
Later in December Megan and I went to see my surgeon. He left MD Anderson a few years ago and is now the Head of Neurosurgery at Baylor University. We both think it’s an absolute blessing to have him involved in my care. He’s just awesome. He was less concerned than the neuro-oncologist. He noted there were slight changes but that they were minimal. He didn’t recommend surgery, and based on my age and the fact we were able to avoid radiation and chemo the first go-round, he didn’t recommend those options, either. He suggested I return to having MRIs every 90 days and to continue to meet with him after each scan. We also discussed a potential breakthrough drug that might help prolong recurrence of my exact form of cancer. It’s making its way through the FDA approval process right now (more on that later). We felt super encouraged but also knew we had a couple more visits and discussions to have before we'd know what was in store for us.
This was a really confusing time. The cancer cells were confirmed to be there, but it seemed like we might not have to do anything about it in the near term. We hedged some of our plans for 2024. Megan left a job she was enjoying because it brought her peace of mind to know she could be ready for anything. I changed some professional plans, too, as having the security of a full-time job with benefits became critical.
January
In late January, we saw a radiation oncologist. He generally shared the same opinion as my surgeon. He summarized his thoughts by saying that if I were his son, at 38 years old, he would not want me to receive radiation for the new growth. This appointment was challenging as it started off with Meg and I watching a 10-minute video about what it would be like to receive radiation therapy to the brain. It's fine, really, it was just a bit sobering. Also, a lot of the discussion with the doctor was about “when” it becomes time for radiation, although at the very end of the discussion there was a little more “if’ing.”
February/March
I had more MRIs in late February. I was the most worried I have ever been before scans. The way my cancer works is it can progress rapidly or slowly, or it can progress slowly and then suddenly rapidly, but no matter what it will progress. I was concerned that now that we know there’s a little bit up there, it would start taking off.
We met with my neuro-oncologist the first week of March. It was the first time I had seen him in person since the December scans. He let me know immediately that there were no changes from the December scans. We debriefed on everything that happened since December and formed a game plan. It boils down to scans every 90 days, and a watch and see approach. We also discussed the breakthrough drug, Vorasidenib, and how I would be a great (basically the ideal) candidate to receive it if it is approved by the FDA (potentially in August). I can’t overstate how encouraging it is to have this drug in play. It is suspected to prolong the timeframe for needing surgery / an invasive treatment by approx. 2.5 times when compared to not taking the drug.
Next Steps
My next MRIs are in June. Overall, what’s happened in the last several months was stressful and a shock, but the outcome is nothing to be upset about. It’s been almost 5 years since my surgery. I am lucky and supremely thankful to be as healthy as I am.
This experience also made evident a few things I am taking into account for the future.
The news was much harder on the people that care deeply for me than it was on me. It hit Megan hard. She was a rock for me throughout the three months of figuring things out. It just weighed on her heavily. Good friends also expressed a lot of concern. I could feel the impact it had on them. In this respect, I think what I am taking away from this is I am going to talk more about my prognosis when it’s appropriate. It seemed like I hadn’t done a good job explaining how things work with this disease. A couple of good friends didn’t know/understand the cancer could return and thought it was licked. I explained that low grade gliomas are not something that can be cured. You just try to live as long as you can. But there’s a lot of hope for a long life. I am relatively young and there are medical breakthroughs at a more rapid pace than ever. I guess the point is I realized I am more prepared to deal with my disease than everyone else because I know the most about it and think about it so much, and the best thing I can do is help prepare my people for the future by talking about it more candidly but with optimism.
The second thing that was evident is how wide our support system spans. Family, friends, co-workers, random people in the community, so many people who knew what was going on surrounded us with support. We experienced this in 2019 after the surgery, too, but it’s still an incredibly heartening thing.
I reflected a lot during this period, especially in the weeks immediately following the December scans. I looked hard at the 4 ½ years that had passed since surgery and thought about whether I had made the most of it. I was honest with myself in saying that I had not. There’s a lot of work left to do on myself to be the person I want to be for as long as I am here, and truthfully this medical development has huge upside. It’s a reminder. It’s a warning. It’s something that I can’t really downplay. There’s a need for prioritization and self-discipline that I can’t keep minimizing. I must and am motivated to hold myself accountable for being who I want to be for my family, friends, community, and everyone else in my life.
Nick