Between physical therapy and doctors, I have very little time to unwind these days. Yesterday, I met with the geneticist, who likes me because I’m a geek and she doesn’t have to explain as many things.
Turns out that, unlike most cancer patients, I only tested positive for one weird gene. And it’s not meaningful, as far as they know. (They call it a “variant of uncertain significance.”) “We’ll update you if we find out it means something,” she said.
I did get to argue with one of the treatment team, which is always fun. She told me the kind of tumor I have is almost always encapsulated, and rarely spreads into the lymph nodes.
“Then why do you want me to take five years of hormone suppressants?” I asked. She then said something that got my back up: “Better to overtreat than undertreat.” Oh, no, no, no, no, no. That’s bumper sticker thinking.
I think I mentioned before that my tumor (I call it “Donald” for obvious reasons) is so rare, they clump it in with a group of other tumors that are invasive and higher risk. Yet they still want me to have radiation and take powerful drugs. My tumor type is typically indolent — like me! And when I read the research, they all say the same thing: It’s hard to decide the best treatment protocol because they don’t have enough tumors like this to decide.
This is why I’m sending my slides off to Johns Hopkins’ rare tumor center. Someone is going to have to give me some solid, data-backed reasons before I’m going to fuck up my system like that.
Won’t they have more information once they actually remove the tumor and send it to pathology — won’t that show for example, if it is indeed well-encapsulated? Will they be doing genetic testing on a tumor sample to better understand the tumor? Will they be testing the sentinel node? In my experience, there is a lot more information to make treatment decisions on after surgery. Before that, there is a lot of guessing based on incomplete information. In any case, good luck!
Susie – I don’t know you personally but I doubt “indolent” is a good descriptor for you. You have reached so many people and continue to strive against so much. {Insert hang in there kitteh poster here}.
Same treatment either way, they’re telling me. I’m not convinced yet.