I think I'm so smart, but it turns out my two intensive weeks at Google U haven't made me a doctor. Lots of test results to report, but uncertain about what it all means. For a girl like me, who loves to have everything crystal clear, this is frustrating.
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."