It’s been a weird day, starting with genetic counseling and going through an MRI, a blood draw for genetic testing, and a nuclear-based MUGA heart scan. I had an emotional moment getting the IV put in, a shuddering remembrance of what it’s like to be a cancer patient, and I felt the deep sense of what’s to come. It passed, and I actually got to snooze during the heart thing, although I am currently radioactive and not allowed to cuddle my kids or small babies. Perhaps I should get this cat off my lap?
The genetic counseling session was not news in any way, but it was a good thing to get the testing underway. But what was absolutely shocking was the confirmation that the diagnosis that I have been carrying around for 16 years was not correct. I have been under the impression that I had DCIS, also known as Stage 0 cancer. I had one doctor almost sneer at it once, saying that back in the day it wouldn’t have even been considered cancer, but rather like a pre-cancer. I knew my tumor to be hormone-receptor positive, but HER2 negative. I thought that the treatment I received was so hardcore not because the cancer was that bad but because I was so young. Turns out it was only slightly true.
I requested old records from Northwestern last summer, when both my mom and I were toying with getting fresh, more complete genetic testing. Looking through old pathology this weekend I saw something that freaked me out, and shared it with doctors today. The tumor report did have one component that said DCIS (grade 2, which is higher than what I have now), but there was another line that said INFILTRATING ductal carcinoma. Which is what I have now, which is worse than I thought before, which makes it a higher stage than I thought before. AND, it was in fact HER2 positive, which is more aggressive. It was so much wrong, for the last 16 years.
Ultimately it doesn’t mean THAT much, this is a new cancer anyway so what came before doesn’t really matter. And the fact is still probably better that I got more treatment than I thought I needed rather than vice versa. One thing I am feeling is a growing and comforting trust in the care I’m getting now; I had been feeling nervous that I should head into the city to the big teaching hospital to get the Cutting Edge course. I’m more and more convinced that the team I have sees everything, is in fact offering cutting edge treatment, and communicates everything better than I thought possible. History repeating and yet rewritten.