I saw my oncologist last Thursday. I had some things I wanted to talk about with him, specifically the schedule for my follow-up scans, etc. Naturally, I would love that reassurance that everything is fine, or if it’s not, the knowledge that we have caught whatever it is as soon as possible. However, scans do expose you to radiation which causes, um, cancer, and they also can show false positives which can cause unnecessary worry.
He has recommended follow-up scans yearly (so, July), which makes sense according to the literature, etc., but still doesn’t make me feel totally at ease, since that feels like SUCH a long time if anything was happening. I thought I had read something about the recommended schedule for follow-up for Stage IIIB melanoma being every 3 months (GIMME MA SCANS!), but since my method of reading anything on the internet relating to my diagnosis is “Scan as quickly as possible then CLICK AWAY!” I might have missed something in the comprehension there.
(So… I just wrote down something there that I haven’t even actually told many people, let alone written here. I had Stage 3 cancer. Stage 3 B, to be precise (which takes that lovely 5-year-survival rate down a few psychologically important notches). I’ll pause while I let you google Melanoma survival rates by stage. Please note Stage 4 rates and send out a thousand thanks that I didn’t get that far and a million prayers that I never do. Now back to our regularly scheduled programming).
So anyway, while I was Googling that schedule, of course my eyes fell upon those damn survival statistics. My brain has this fantastic survival mechanism of never being able to remember exactly what those numbers are, except that I don’t like them, so I try to avoid looking at them. It works, except when I do see them, and then I get sad again. Luckily, I knew enough to wait until just a little before my oncology appointment, but there it was again. Damn.
But between feeling sad (and posting about it on Facebook) and the appointment, I got some wonderful inspiration from two incredible warriors. The first was news that a husband-of-a-friend battling a super rare and aggressive cancer was going home from his INTENSIVE treatment in the hospital a full ONE TO TWO MONTHS earlier than expected, which is AWESOME. The second was an update from Niki about her classmate who is KICKING the SHIT out of stage 4 colon cancer. Needless to say, both of these pieces of good news helped to cheer me a bit.
The oncology appointment itself was as uneventful as I expected it to be. I pretty much know all of his questions by heart now, and I would have called him sooner if the answer to any of them had been “yes.” Why on earth would I wait if I had a new, persistent headache? I realized before going in that the 3 month schedule for follow up for peeps like me lumped scans in with oncology follow up, so… that’s already what I’m doing. So no bonus scans for me, although he did say I could get a chest x-ray (low level of radiation, not bad to just check in on the old lungs).
I did ask him some of my other questions, including getting some idea of if there was any increased risk in having any future pregnancies. He did a quick lit review during the last part of my visit, and basically found what we both already knew: there’s no evidence, but we can never say never, unfortunately.
He also showed me something that made me cry at the moment, but now actually gives me some hope.
In one of his books, he had a chart of survival rates over time by stage. It was more or less the same info I had seen online that always made me sad, but this was a GRAPH. And instead of it saying something like “After five years: XX%, after 10 years XX%” it showed the exponential curve over time. What this did for me, psychologically, was help me realize that the longer I go, the better my odds are.
It also made me visualize my future in a different way. When I looked at the far end of the curve, the 20+ year mark, I SAW MYSELF THERE. I saw myself as one of those survivors who made it under the curve.
I also saw that numbers are misleading. Not in the way we all think (“Lies, damn lies and statistics”), but that seeing numbers alone can create a false picture. When I saw a visual representation of those numbers in the graph, I realized what an enormous percent 50% really is (even 40%). It’s hard to explain, but it was a very real difference for me. (After the visit, I also realized that the numbers in his book were better than the ones I had read online, which also gave me hope! It was not an old book!).
So overall, the visit was a good one. No changes, and little bit better news, and probably a good shift in perspective (something we can all use, all the time).