Neuroendocrine tumors don’t get staged like other types of tumors: they get graded. Quite simply, the tumors get called one of three numbered grades based on how quickly the cells divide and how well-differentiated they are. Grade one is low, grade two is medium, and grade three is high.
Some people with G-1 can live for decades with no growth on no drugs at all, or just a monthly injection. G-3 is said to be almost a different disease altogether, often treated with an intense regimen of chemotherapy that makes one lose their hair. When I was diagnosed I was on the upper end of G-2–my tumors grow fairly quickly compared to other medium-grade tumors, but they are well-differentiated and they respond to the slightly less-toxic therapies.
Last week I had my first appointment with my oncologist since my surgery. After a little bit of warm up about how good I look and how much oxygen i’m now getting without 1.4 extra liters of fluid around my lung, he blurts out:
“Your tumors are now for the first time being called G-3. Did you know that?”
My heart stopped.
Blood started pumping in my ears.
I have only cried once before during a doctor’s appointment and it wasn’t when I was first diagnosed. Tears suddenly sprang to my eyes.
A thought that has never before seriously crossed my mind came surging up to the forefront: “I’m not going to live through this.” Then: “I’m scared.”
It’s OK to be scared. But I am a liver. Where is my silver lining? It took me a few days to find it.
Three is just a number. Two is just a number. And like my old oncologist used to say, tumors don’t read the textbooks. So the pathologists start calling it a G-3–so what? In my case the recommended treatment is still the same. No matter what it’s called, the tumors will respond to the treatment in the way that they biologically respond to the treatment.
I had a biopsy in November 2010 and a surgery in December 2010: these were the tumor samples used to grade my tumors for two years. No one has had the opportunity to test any new samples since then, so it could be that my tumors have been G-3s for a year, or even two years. No one knows when the tumors cells mutated and started growing faster. Still, my cancer hasn’t spread. And clearly i’m still alive. Working through a few side effects of surgery still, but basically feeling good.
I wrote something in September 2011 that I have been thinking about a lot lately: All of these scans and all of this pathology, they’re just filling us in on what has already happened. They’re week-old or year-old newspapers that we’re suddenly discovering. What is really happening is the doctors and I are running after the cancer as fast as we can but we can’t quite get there. It’s always one step ahead. It’s not maliciously one step ahead, it just is. It is growing and dividing and mutating in real time–doctors find out after the fact what it has done. I take chemotherapy and take chemotherapy until I get a scan that shows growth. I only get a scan once every two or three months–when in that time did the chemotherapy stop working and the tumors start growing? When I “got” cancer on October 25, 2010, I already had it. For all I know, it could have been growing for 10 years before I started exhibiting the more unpleasant symptoms and it finally got found. 10 years!
During the appointment, the doctor rushed to try to sooth the news: “The NET grading system is still fairly new and it’s possible they will change it so there are four grades instead of three. You would have a G-3 out of four grades, with G-4 being almost a different disease, and definitely not what you have. What you have, with the cell-division rates that you have, would be like a medium-high grade.”
I’m still scared.
What do I do with this fear? I try to remember to focus on the things that really matter to me. If my time is short, I try to prioritize doing the things I really want to do in my life. But this is hard. A lot of the things I really want to do I can’t accomplish right this second. I’m only 27. I can’t get married and settle down and get a dog and have kids and become an aunt and become successful in my career and have grandkids and grandnieces and nephews and retire all at once right now. I can start writing a book, but it’s not going to get published in a week.
If I can’t do all these things right now, at least I can just live right now.
And G-1, G- 2, G-3…they’re just a numbers.