Preview of Thursday's surgery: Lymph node biopsy

Cancer is all about chaos, as cells run amok, split up and skedaddle in all directions, like ants boiling out of a nest that’s been poked with a stick.

But sentinel lymph node surgery is predicated on the idea that breast cancer spreads (or metastasizes) in an orderly way, more like a line of ants on a mission to infiltrate an open peanut butter jar. Its first stop en route to other body parts is likely to be the lymph nodes, clusters of bean-shaped thingies (not the actual medical term) that filter lymph and other fluids. Their nearest location to the breast is under the adjacent arm.

One medical term I’ve now mastered is “axillary,” the fancy-pants word for armpit.

Just a few years ago, invasive breast cancer like mine was treated with an axillary node dissection – removing most or all of the dozen-plus lymph nodes in the armpit to see if the cancer had spread there.

But doctors figured out that cancer always made an initial pit stop in a few “sentinel nodes.” Nowadays, it’s possible to remove and biopsy just those sentinel nodes. If they’re cancer-free, then that should be true for the rest of the nodes. Taking out only one to five sentinel nodes reduces the pain and potential complications such as swelling, stiffness and, most ominously, lymphodema, associated with the full axillary lymph node dissection.

Here’s how it will work: When we get to the hospital on Thursday, we’ll report to the department of nuclear medicine –- marked by that black-and-yellow trefoil I remember well from elementary school drills where we hid under our desks and covered our heads with our arms to prepare in case the Soviets dropped the bomb on New York City.

The tumor site in my breast will be injected with a radioactive substance (I persist in calling it “uranium,” because that’s a familiar word to me but it’s actually technetium-99). After about two hours, the “uranium” should make its way to my sentinel lymph nodes. To make them even easier to find, a blue dye will also be injected.

In the operating room, Dr. C will use a Geiger counter (that is literally what it is, not just my attempt to substitute words from my limited store of scientific terms) to locate the sentinel nodes, which presumably will get it to beep up a storm, and will also be identifiable by their new, true-blue hue.

She’ll cut out those sentinel nodes and send them stat to an Alta Bates pathologist. He or she will check them on the spot for signs of malignancy while I’m still anesthetized.

Within 20 minutes, Dr. C will get a call telling her either that the sentinel nodes are cancer-free –- or that they’re not. If the former, we’ll be done for the day. If the latter, she’ll make a bigger incision and remove many more nodes, i.e., do an axillary node dissection.

Finding cancer in my lymph nodes would make this a whole new ball game. Instead of NotSoBigC, we’d be dealing with capital C, Big C.

Needless to say, I devoutly hope for the “all clear.”

* * *
Next post: A preview of the other part of Thursday’s surgery

Flashback to the start: March

"There's a little lump here; do you feel it?"

Dr. F, my primary care doc, guided my fingers to the side of my right breast. I dutifully palpated, but had to confess that I couldn't feel anything.

"Well, you're due for your annual mammogram anyway. We'll send you in for a sonogram at the same time," she said.

A week later I was at the spiffy new Carol Ann Read Breast Center in Oakland. The mammograms were the usual experience of mild discomfort -- breasts squished flat between the cold glass plates, neck unnaturally arched. The technician took considerably more shots than usual, then ushered me in for a sonogram. Lying down, having warm goop spread on me and a wand-like device passed over my skin was much more pleasant.

"The radiologist wants to discuss your results with you."

In a dozen years of annual mammograms, I'd never heard those words before.

Mammogram films look lovely to me, like images of the Earth from space -- silhouetted on a black background, the globular breast is filled with swirling white luminescence. My films hung on a light board on Dr. K's office wall.

It turned out they weren't lovely at all.

"Do you see this concentration here?" she pointed. "We'd like to see what's causing that. We're recommending a needle biopsy."

Fine, I could deal.

Then she continued. "Unfortunately" --a pause, while my heart dropped -- "there is another area over here where we see calcification. We want to do a needle biopsy there also."

Whisked to the office of the surgery coordinator, I was scheduled for two appointments, a week away and two weeks away, and given a brochure explaining breast biopsies.

The white-haired volunteer who'd chaperoned me from office to office now escorted me to the curbside.

"They found something, didn't they?" she said (not hard to guess since she'd taken me to the surgery coordinator's office). She patted my arm. "It will be okay." Her voice quavered, her eyes welled. "The same thing happened to me and it was cancer, but I made it through."

Jeeeeeeeeeesus.

She wanted to be kind, but I wasn't ready to make the leap from needing more information to confronting the Big C.

I called Mark. "What's the good news, honey?" he asked, his perpetually upbeat question.

"Well, there isn't much today. There's the bad news and then there's other bad news."

Another bosom buddy

It's like an underground sorority -- friends and friends of friends who've had breast cancer. The other night I had dinner with Marianne, whom I've known casually for years.

Slim and elegant, Marianne has a great sense of design that shines forth in everything from her chic purse to her precisely angled silver bob. She had breast cancer 13 years ago when she was in her early 50s -- my age (that itself suprises me, because I thought she was my age now). It had spread to her lymph nodes. That means it had metastasized - which is one of my fears; I'll find out my lymph node status after my next surgery on Sept. 2. Despite having the more-extensive lymph node surgery, she never had a problem with lymphodema (another one of my fears) and neither did any of the eight women in her cancer support group.

Along with a mastectomy, she had a hysterectomy and oophorectomy (removal of both her ovaries) because there was something suspicious on one of her ovaries.

"I just wanted them to take it all out because I didn't need it anymore," she explains. "I wanted to be done with it didn't want to be worried about it." After surgery she went through months of chemotherapy.

That all sounds grueling. Yet she says it wasn't an ordeal.

Chemo side effects weren't that horrible. She never got outrageously nauseous, just had that slightly "off" feeling you get in early pregnancy.

"Somehow I just sailed through it all. I lost my hair, which was upsetting, but then I got a really cute wig, mainly because I commute by BART and I didn't want to stand out. That wig was so flattering that I remember someone at work telling me I had never looked better. I just had to laugh."

She apologizes that she doesn't remember more specifics.

Actually, that vagueness is more reassuring than a detailed, harrowing war story. The message I get is that this wasn't cataclysmic; it was just a brief chapter and then her life flowed on, not forever cleaved into Before Cancer and After Cancer.

Did she decide to have reconstruction? Nope. "I'm not going to be posing for Playboy, but my husband likes me."

That's a great mantra; one I could take to heart.

The C Squad

Last night was a girls' night out cancer cabaret. My friend Vicky - herself a veteran of non-Hodgkin's lymphoma - took me to meet her neighbor, Lori, a beautiful redhead who's a whirling dervish of ironic wit, open-hearted compassion and fabulous style. She's like the madcap heroine of a a 30s screwball comedy but with a hip sensibility -- Carole Lombard crossed with Susan Sarandon.

Lori had cancer at different times in both breasts and lost them both -- "I got struck by lightning twice."

She was a 34B with breasts so pretty that her surgeon cried about having to remove them. For show and tell, she pulls up her shirt to show me her reconstructions. They are as lovely as she is. The lack of nipples and the faded white scars criss-crossing don't matter at all. A tatoo of a winged skeleton arches across one side.

She has some insightful tips - things that I'm bummed to hear, but that are good to know.

Tamoxifen, the drug I'm likely to be taking for the first year, can cause clinical depression and that's something doctors don't tell you in advance. The other estrogen suppressors that generally follow it for another five years have their own funky side effects.

Once you've had radiation, if cancer recurs in that breast, you must have a mastectomy because your body can't handle additional radiation there. And because radiation damages the skin and underlying muscle, you can't have reconstruction with tissue expanders and implants; the only option available would be flap reconstruction - surgically moving skin from elsewhere on your body.

Lori welcomes me warmly as a fellow sister in the C World and showers me with gifts -a silver milagro cat charm, a pottery bowl with a cat's face, a catnip mouse for my tabbies (sensing a theme here?) and a beautiful book of vibrant, Frida Kahlo-esque paintings by an artist chronicling her breast cancer journey.

All my previous cancer-related activities have been depressing and overwhelming, involving some combination of invasive medical procedures, receiving bad medical news or researching medical stuff that's over my head. This was my first C World outing that was actually fun and life-affirming.

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.

My main doc weighs in

I couldn't help whining. "You said it was 99% certain that it wasn't cancer! You were wrong!"
Four months after she told me the results of my needle biopsy and made that statement, my primary care physician, Dr. F, was calling me for an update. She'd just received a copy of the pathology report from my excisional biopsy.
She listened patiently as I ran through the chronology of tests and results since we'd last spoken.
"The important thing to realize is that the cancer is gone now," she said. "There's no rush. You can take your time to select an oncologist and get treatment."
She spoke approvingly of the Oncotype DX test, whose results will determine my treatment plan. "In the olden days, everyone with breast cancer got chemotherapy. Now it's much more individualized. Our goal is to attack each cancer individually."
She was reassuring when I plaintively asked if I'd caused or exacerbated the situation by taking birth control.
"You are not to blame. The pill doesn't cause breast cancer. It might cause it to be found earlier."
I asked if I need to eat less soy, since it contains an estrogen-like substance. As a quasi-vegetarian (at least at home), I eat about 4 ounces of the stuff a day, I told her.
"That's no problem," she said.
Of course, I've dumped my birth control pills -- but that's sent me into hormonal heck, with hot flashes galore. (One will hit and I'll whip off my shirt no matter what I'm doing -- as long as I'm home. Mark is surprisingly enthusiastic about this new development.) Did she have any advice?
She's a fan of acupuncture.
She knew one of the two oncologists Dr. C referred me to -- the one who's been doing this for 30 years but perhaps is a little lacking in the bedside-manners department. She didn't put it that way, but she said: "You're going to be seeing your oncologist every three months for a very long time. It's important that you feel comfortable with her. I'd suggest you make introductory appointments before deciding."

A little more info

More updates from Dr. C: The pathology report is in. The tumor is estrogen-receptor-positive and progesterone-receptor-positive, "which is favorable." From my quickie online research, I've learned that means that the cancer cells are fueled by those two hormones -- goodbye, forever, birth control and wish I'd never gotten started with you -- and thus can be treated with "antiestrogen" drugs that block absorption of the hormones.
The tumor size measured out at 2 cm. "There is a little bit of ductal carcinoma in situ around it, about 1 mm, pretty small, but it comes close to the superior margin." This may mean removing a little more breast tissue, she said.
Here's a part I found creepy: "The KI-67 index, which measures the amount of tumor cells actively dividing at the time of the surgery is 15%, which is low but not as perfectly low as we'd want it to be," she said. "We'd rather see it down around 5%."
I had pictured the tumor quietly sitting still, knitting or reading and maybe occasionally taking a little stroll like residents in a retirement home. The idea that it was "actively dividing" -- running around my breast rearranging the furniture and grabbing up all the good seats -- struck me as awfully presumptuous.
And I was shocked, shocked, that despite the advanced medical degree I earned in Google U last week, that she'd come up with a term I'd never heard of. Old G.U. let me down when I went to research KI-67 (and it's not even in the index of the cancer books I checked out of the library yesterday). Most articles about KI-67 were too teckie for me. I did find one that said a low score is 0 to 15%, medium is 16 to 30% and high is 31 to 100% - which puts me on the high end of low.
She'll send my cells out for the Oncotype DX test on Monday or as soon as my insurance approves it - and the results should be back in 10 days.

Getting the news

My hands were shaking, but my reporter's instincts kicked in. I grabbed my laptop and took the crappiest. notes. ever. as Dr. C delivered the news over the cell phone I'd been clutching in my sweaty palm all morning.

Biopsy results were in for the lump in my right breast. "The pathologist sees evidence of invasive ductal carcinoma." She paused a moment and then put it super-simply, in case I hadn't grokked those words. "That means you have breast cancer."

She quickly moved on to "the good news." The tumor was small, only 1 cm. (A day later, when the final pathology report was in, she upped that to 2 cm.) It was still being tested to see if it was positive for estrogen receptors and progesterone receptors; the pathologist thought it likely would be. If so, that might mean I could be treated with hormone blockers, rather than chemotherapy.

They think they removed all of it -- "got clear margins" -- but there is a chance there are still some cancerous cells near the skin that she would remove in a future procedure.

There are still some other unknowns. Has it spread to the lymph nodes? Since it's an invasive cancer, they need to check for that by doing a sentinel lymph node biopsy - another surgery under general anesthesia in which she'd made a small incision in my armpit and then remove one, two or three sentinel nodes. I asked if the pathologist who read my breast MRI had spotted anything on my lymph nodes and wriggled with automatic teacher's-pet pleasure when she said, "Good question." The answer wasn't entirely reassuring: "He noted that your lymph nodes were prominent but there was no sign of malignancy. They could have enlarged in reaction to the two needle biopsies you had earlier."

Since I'd spent the past week taking an accelerated medical course at Google U, I immediately asked about whether the lymph-node surgery could trigger lymphodema - a painful, debilitating and permanent condition in which your arm swells up with lymphatic fluid. (Warning: Do NOT read the Wikipedia entry on this, and do NOT look at the gruesome photographs therein.) She said the risk was only 3%, since she's be removing very few nodes.

She paused and said, "You're taking this remarkably well."

I mumbled something lame. "Well, what else can I do?" (Later, I thought of a few things: Cry, scream, throw things, curse at her, curse at the universe, etc.)

Next she'll send the cells they extracted for a test called Oncotype DX, which looks at 21 different gene types present in the tumor. The results will help determine if I should have chemo or not.

She wrapped up with the ultimate good news (and her cell phone number). "This is 100% surviveable. It's just a matter of jumping through hoops to get the appropriate treatment."