“Whatever you do, don’t start searching on Google – just talk to your provider.”
Every medical provider I speak with says this, and I know why, but I hate it. It’s super-condescending.
I get that a lot of patients start reading about “alternative healing” methods and other nonsense for serious diseases and get all kinds of bad ideas unsupported by evidence. I am not one of those patients. Google is also a place where scholars and researchers can go to collect reasonable information about the latest in their fields. Please have a talk with me before assuming I am the former rather than the latter.
When I had a question about the impact of radiation therapy on long-term outcomes for chondrosarcoma, I also had a provider say “it’s too early to even start talking about that yet – let’s just focus on things we know for now”. Again, I get it. No need to borrow trouble. We don’t even know if it’s chondrosarcoma yet or whether radiation would be necessary, so why even look at long-term outcomes for chondrosarcoma treatments?
1. Because I’d like to have as much information as possible about the most likely possibility up front, since I don’t have a good feel for how much research I’ll be able to do after the first operation.
2. Because if it is chondrosarcoma after all, the surgery choices we make now will, to some extent, depend on the medical team’s philosophy about chondrosarcoma radiation treatment (thorough vs. limited surgical resection, for instance). I’d like to know the implications of that philosophy so I can make informed decisions.
3. Because I’m a planner. I realize we don’t know what will happen, but feel more comfortable if I can build out some understandable contingencies based on what little we know today. It’s how my brain (more or less) works.
So, yes, I’ll use Google to read as many relevant and legitimate scholarly journal articles as I can find about skull base tumors, chondrosarcoma, and related things. I’ll also want as much information as I can collect about the different likely treatment scenarios and outcomes so I can read all the related research and form opinions about the various options.
I like to know what’s happening, and I like research, so that’s that.