Missed the first post? Read it here.
One of the things I learned this year (one of many I’d be fine not knowing, thanks) is that documents can hit your online patient portal hours before your primary care provider sees them. I knew that, if I logged in and saw the results there, I’d have to deal with them on my own without her input and guidance.
Of course I looked. Granted, I did have my parents to fall back on if there was information on the pathology report that I didn’t understand, but honestly that first “carcinoma” was enough. What else did I need to know?
The initial pathology report actually has a lot of information on it. It doesn’t have everything—people will want to know your stage as soon as you tell them you have cancer, but you don’t get that information until after the surgery—but it has a lot. Your doctors will go over what things mean specifically for you, tailored to your results, but this is a basic overview of the information available on the initial report.
Invasive vs. in situ
This designation is an either/or: if the cancer isn’t invasive, it’s in situ. The Latin means “in place,” so an in situ carcinoma hasn’t spread beyond where it started. “Invasive” means the cancer has spread beyond the original site into the surrounding tissue. It sounds scary, but most breast cancers found are invasive. (Okay, it’s still scary, but the fact that it’s common means the medical field knows how to treat it, and a cancer labeled “invasive” can still end up being a Stage 1 in the end.)
Ductal vs lobular
This one indicates where the cancer was found. If it’s ductal, then it’s in the milk ducts. Lobular cancer was found in the lobules, which produce breast milk. The location of the cancer helps guide treatment.
Histologic Grade
This section has a lot of data and a lot of numbers, but the final one—the cancer’s grade—indicates how quickly the cancer is spreading and how different the cancer cells look from normal cells. It’s like golf, so you’d like to see lower numbers here. A Grade 1 is slow-growing, less likely to spread, and has cells that look close to normal cells. Grade 3 looks very different from normal cells and has a potential to grow and spread faster. This information will also help guide your treatment.
Hormone Receptor Status
Breast cancer can be “receptive” to three main hormones. If it’s receptive, then that hormone acts like a key turning in a lock and starting an engine: that specific hormone causes the cancer to become active. My surgeon had a whole speech about it with hand gestures, but I’m going to make this into a metaphor about my cat.
Van Go was a little old lady (she had a crumpled ear, which was why the Humane Society gave her that name) who was very particular about cat food. She preferred dry food to wet because she was a contrary cat, and she only ate specific colors of the dry. After Van Go was done eating, there’d be a little pile of the rejected color, separated out from the two colors she’d eaten. Van Go was receptive to two colors of cat food, but not the third.
The two colors she did eat fueled her for her little old lady adventures. If, for some reason, we’d decided to go through the bag and remove those two colors, she would have starved. Those were her food, and she ignored the third color. Van Go was a cat and not a tumor, but you get the picture. (In case you’re concerned, she lived a very long and happy life to an age the vet could only estimate as “19+” and she was always full of purrs and head bonks and her two favorite colors of crunchy food.)
If a tumor is receptive to a hormone, then part of the treatment can involve the reduction of that hormone. We’ll get to hormone therapy later, but yes, suppression of estrogen leads to hot flashes. This is your cue to send the cancer survivors in your life their favorite chocolates.
And finally, a note on the size estimate: the report will include an estimate of the largest size in all three dimensions, but it is only an estimate. It’s not uncommon for the final measurements after surgery to be slightly larger than this initial report. In my case the estimates different from the final by 2mm, so it’s not a huge difference, but it was something more than one friend warned me about, so I’m passing that along, too.
Information overload
Already we can see that even just this initial pathology report is full of data and overwhelming. The diagnosis is already individualized at these different levels, depending on where the cancer started, how much it’s already spread, how different the cells are, how likely it will continue to grow and spread, and what fuels it. All of these answers helps the team of doctors make their plan of attack so they can remove the cancer and take the most efficient steps to decrease the chances of it ever coming back.
At this point, though, right at the diagnosis, it can feel like those are all just tiny details. The main point is that, after all those scans and the core needle biopsy, you can’t just breathe a sign of relief because it was a false alarm. You have to shift your plans and, at some level, even your perception of self. You’re not a healthy person anymore. You have cancer.
This is also the moment where you start having to decide what to tell other people, or even if you want to tell them anything at all. That’s a very personal decision, and I’ve known people who’ve made choices all the way across the gradient from making it public to only informing those who absolutely need to know. My next post will discuss information, both getting and disseminating, in more detail. For now, though, fix yourself your favorite drink—make it a pumpkin spice if that’s your pleasure—and memento vivere.
Rebecca Frost 