I started radiology prep. It’s very weird and not what I expected.
I don’t have energy to write a long blog post. So, I’m sorry for the blunt delivery today.
I learned during radiology calibration yesterday that my second surgery pathology wasn’t really “clear.” I asked my radiation oncologist to print it, as I still hadn’t seen it in the month since the second surgery. I like to have a copy of all pathology reports.
It was negative for carcinoma, but positive for atypia in 3 out of 4 of the re-excision tissues. He was like “yeah, this isn’t anything of concern.” I didn’t really look at it closely since we were doing the radiation calibration. More on that in a minute. Last time I saw him he said my biopsy showed only grade 2 DCIS. I could read it on the path myself-it was not just grade 2, but a combination of 2 and 3, 3 being high-grade which has a higher chance of becoming invasive. That pathology said “comedo and cribriform necrosis” which are higher grade cell formations. I had done enough reading to know that, as a layperson, reading my pathology. The pathologist said grade 2, so it’s not like the oncologist was lying. BUT IT IS SO FRUSTRATING to hear one thing and realize it’s not the whole story.
During calibration they lie you down on the table of the radiation machine and have you lie with your arms both above your head, like you’re doing ballet. They lie you in this mold type thing, kind of like a bean bag chair that molds your position. That way the radiation is always directly focused on only the part that is going to be radiated.
Then they make four tattoos on your skin to make sure the machine is lined up the correct way every time. This part–I was excited about. But it’s not a tattoo machine like my mind wishfully hoped it was. It was a hypodermic needle dipped into ink and pressed into my skin. The one on my sternum hurt like a lot, and I got teary eyed. That’s when I realized I was dealing with something awful again. That little pin prick and its 3 cousins that also poked me (one on each side, and two on my sternum/between breasts) reminded me that I am dealing with disease. And it wasn’t fun. It sucked.
So I came home and read my pathology report.
It took one click on a Google search to find that the flat epithelial atypia that they found in my re-excision is pre-cancerous cell growth. That’s the re-excision. THE RE-EXCISION has atypia.
And I had spent the last month thinking they’d gotten it all, anything bad. But, nope.
I don’t know what to think other than hope the radiation kills it all. But I am so frustrated and exhausted. Taking oral chemo (tamoxifen), getting radiation, and the surgery apparently brings my odds of it coming back down to 3-4%. Which sounds good. But it’s hard knowing there are already atypical cells hanging out in there.
I knew when I got diagnosed that this was going to be a journey. Apparently this journey has more twists and turns than I was expecting. It is hitting me hard, because I really thought it was all going to be done. I believed my doctors that the surgery was going to get it all.
I know intellectually that they can’t guarantee anything. But it wasn’t until yesterday that I realized how deeply I was counting on this to just go away and be a footnote.
I think the doctors have experiences that have led them to choose “how to best talk about the data” to the average patient, what has given the oncologist the best results of patient response over the years. For me…I NEED THE FACTS. I’m highly educated and want the FACTS. I’d like it if they say it kindly, but I want the real facts. I will share this with each doctor next time.
Here’s my radiation mold and the radiation machine that did the calibration. I will be in a different machine for my treatments. It’s very surreal. I feel like my entire life is surreal at this point, and sometimes things feel fuzzy and out of focus. Like, they actually do. I feel like I don’t see things clearly anymore, it takes longer to focus my eyes when I shift my gaze, and I can’t think of words for things. My brain has lost…brain…through this.
I have nothing uplifting today other than I am still someone that believes in HOPE.
Perhaps believing it will help me feel it today.
Namaste my loves.