Test results: Pathology report, Oncotype DX

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."

Information overload: Pathology report

"Here's your pathology report, which is basically your breast cancer report card," Dr C said as we gazed at the three pages of single-spaced gobblety-gook. Mark and I had come to her office for the post-op visit.

Bottom line: I think I got a C+ or maybe a B-. Everything was sort of mid-range -- "not as good as it could be, but not as bad either," she said.

The tumor's "histologic grade composite (Nottingham)" was "II, tubule formation 3, nuclear grade 2, mitoses 1."

"Of course, you remember mitosis from high school biology," she said.

Mark nodded agreeably while I looked at her slack-jawed. Of course, I don't.

"Mitosis is the process of cell division." She went on to explain about spindle apparatus, chromosone centers, receptive nuclei and skewed arms, while I waited impatiently for the bell to ring so I could get to the cafeteria and strained to hear if that was "Band on the Run" coming in over the loudspeaker before the principal's announcement.

Anyway, my overall grade of II (on a scale of I to III) means that my chromosones are acting a little funky - bent arms, skewed. Grade I would mean they were normal; Grade III is seriously messed up. If I'm getting this right, the rate of cell division is mildly abnormal, and the way they're doing it is wacky.

The docs looked to see if any tumor cells were roaming around elsewhere in my breast and didn't see any, which was good. That was my favorite sentence of the report, and the only one in clear English: "The remainder of the breast is effectively unremarkable." Yay!!!! I'm thrilled to be unremarkable!

There definitely is some ductal carcinoma in situ - which she describes as "itty bitty and not super aggressive" and a tiny bit of additional invasive ductal carcinoma near the skin, so she will do a re-excision when I have the lymph node biopsy to get out every last bad cell.

Both estrogen and progesterone receptors were not just positive, but strongly positive, which means they will be treatable with tamoxifen. She mentioned taking it daily for 5 years.

HER2 status hasn't yet been determined, we should get a report on that soon.

She was totally supportive of my going to UCSF for a second opinion and gave me a referral.

Chemo still unknown based on the Oncotype DX score. But whether I have chemo or not, I definitely must have radiation. It will be every weekday for 6 to 8 weeks. Without radiation, there is a 30% chance that the cancer will return in that breast.

What are my risks for recurrence? They're highest in the first five years, she said, so I will be under "increased surveillance" with more frequent mammograms and at least an annual breast MRI (ugh, claustrophobia alert!).

She thinks I should stop eating soy at least until I'm on tamoxifen which would block its estrogen-like effects.

The lymph node biopsy will be Thursday, Sept. 2.