Thank you to those of you who’ve reached out with this question! First of all, it’s a really good one. I realize I could have been clearer about this in my original post about the rectal cancer pathology report. Second of all, I love knowing that people actually read this thing—and read it with a level of discernment that warrants asking such a smart question!
Bottom line up front, I was clinically Stage IIIB at diagnosis. I then received chemotherapy, and the tumor—and the lymph nodes that looked suspicious on imaging—responded to treatment. What was left at surgery had a post-treatment pathologic stage of Stage I.
Because I had treatment before surgery (called neoadjuvant treatment—what was done in the PROSPECT trial), there are two relevant stagings in my case: one before treatment (clinical) and one after treatment and surgery (pathologic).
The pre-treatment staging is based on initial imaging—CT scans and a pelvic MRI. I had these tests done in late January. Using the images, they’re able to determine how far the tumor has grown through the rectal wall, if any lymph nodes are involved, and if the cancer has metastasized. This is called clinical staging and it’s used to determine your course of treatment.
Here’s what the letters and numbers in my clinical diagnosis (T3N1M0) mean:
T3 = the tumor has grown through the rectal wall (T = tumor, 3 = tumor has grown through the rectal wall and into surrounding tissue—lower numbers mean it’s grown into that particular layer of the rectal wall, but not through)
N1 = imaging suggested involvement of one to three nearby lymph node(s). Since they can’t actually determine if a node has cancer in an image they just flag the nodes as looking suspicious. We’ll never know if they actually had cancer in them or not. (N = node, 1 = two of my lymph nodes looked suspicious)
M0 = no metastasis (M = metastasis, 0 = none seen)
My Stage IIIB “summary,” if you will, comes from the AJCC (the American Joint Committee on Cancer) 8th grouping which generally places T3N1 disease in Stage IIIB.
The letters and numbers from my pathologic diagnosis (ypT2N0)—the one that happened after surgery when the actual specimen was sent to an lab for testing—mean the following:
y = staging after treatment
p = pathologic staging based on examination of the surgically removed tissue under a microscope
T2 = the remaining tumor extended into but not through the muscular wall
N0 = no cancer found in any of the 37 lymph nodes of mine that were examined
This corresponds to yp Stage I cancer (pathologic Stage I after treatment).
The next question I feel you’re asking is, so why have two diagnoses?
The pathologic diagnosis does not erase the clinical diagnosis. I was clinically Stage IIIB at diagnosis, and that initial stage remains relevant even though my post-treatment pathology was Stage I. My doctors consider both—as well as my response to treatment—when making decisions about the rest of my treatment.
So, if you’re talking about what cancer Alli had: Stage III rectal cancer. If anyone asks you what was left after chemo and surgery you can tell them a) they are a very smart and savvy person to ask such a nuanced question and b) yp Stage I.
And, importantly, the fact that there was substantially less cancer at surgery than there appeared to be at diagnosis is called downstaging—and it means my cancer responded to chemotherapy, which is very good news.
By the way, rectal just means where it was… colorectal is the catch-all term for cancers of the colon and rectum. If my tumor had been higher, in my colon, I would have had colon cancer. But it was where it was, so I had rectal cancer. They have a lot in common, which is why you hear them grouped together as colorectal cancer on ‘the streets.’
If you have any more questions about this, or about anything I’ve written about, please don’t hesitate to ask! It’s helpful for me to know what’s not landing, and it’s also helpful to me when I have to do more research on a subject.
P.S. Breast cancer staging is done pretty differently. If you get anything from any of this, just know every cancer is different, every treatment is different, and every person is different.
It’s a miracle we know anything at all.
