When I was a kid, my Dad, the high school biology teacher, talked a lot about “no see ’ems.” Sometimes, he meant tiny, little black flies that could torment us during Sierra camping trips. Other times, he meant the profusion of life that can’t be seen with the human eye: amoebas, the subject of an annual lecture in his class, the bacteria in our guts and everywhere else, the tiny mites that live in our eyebrows, the entire invisible ecosystems that can thrive in a crust of Arizona desert sand. In the last few days before my surgery, I begin to think of my breast cancer as a “no see ’em.”
There is no lump that can be felt in my left breast. The docs say that most of what I have is “ductal carcinoma in situ,” or DCIS, cancer that’s growing inside the ducts of my left breast. From the outside, I gather, the ducts just look like ducts, little tubes that delivered milk to nipple during the two years I nursed my daughter. There’s a bit of invasive carcinoma, but not so much that it can be seen without a microscope, not so much that it can be felt.
I need to do more research on this, but apparently, this is the tricky part about DCIS: It can’t be seen. It can’t be felt. Some percentage of DCIS will never become invasive, though of course there’s no way to know if you have this non-invasive type or the type that will go rogue. As a result there’s a huge controversy about whether DCIS is over-diagnosed, when women should start getting mammograms to screen for it, how aggressively it should be treated, and on and on.
As often happens when there’s a scientific controversy, some people use this as an opportunity to “Just say, no,” to science and opt out. People want science, especially medicine, to be definite and feel betrayed when it’s not. (See measles-mumps-rubella vaccination controversy.) According to some patient education documents that UCSF gave me during my pre-op appointments, some women decide to “wait and see” with DCIS, much as many men do with prostate cancer, a usually slow-growing malignancy. The breast cancer leaflet did point out, tactfully, that it “might take some time” to find a doctor who would support this “let’s just see” course of DCIS treatment. I bet it takes a long, long time. Doctors like to take action, they don’t like to sit around and wait.
If you have a loving family that includes a 9-year-old daughter, you throw your lot in with the doctors. The wait-it-out strategy is just not an option. But, as the days tick by toward my surgery date, my choice does feel more and more surreal. I feel just fine. My left breast feels just fine, the biopsy soreness disappeared a couple weeks ago. And yet, so the docs say, I have this serious, serious disease. Because I’m not willing to take any chance that more of this cancer will become invasive, I’m going to voluntarily let them cut out pieces of my body, part of my breast surely, and at least one lymph node which will be tested to see if the cancer has spread. I’m open to the idea of mastectomy, but hoping that won’t happen. And all of this is to treat something neither I nor the doctors can see without a microscope. And yet, I have two friends who started out with what looked like early-stage DCIS, but who ended up having double mastectomies. How this will go is anybody’s guess.
The morning of surgery, I start to zone out as my husband and I walk toward from the parking garage across Divisadero Street to the Mt. Zion campus of UCSF. It feels weird to just walk to a breast excision the same way I might walk to a oral cleaning. At least you can see dental plaque.
The first stop is breast imaging. Because my surgeon can’t see the DCIS, or its possible spread to my lymph system, other doctors and technicians will spend several hours placing markers and guides that will help her figure out how much of my breast needs to come out, and how many lymph nodes. Because these mammogram machines aren’t designed to be used on people who are under anesthesia, I get to be awake for all this marking. I suspect this is going to be the most unpleasant part of the day. I am right.
I meet with a young radiology fellow who explains what they’re going to do: When the first radiologist did my first biopsy at St. Luke’s-Roosevelt in New York, he left two titanium “clips,” or markers at the suspicious spots. I gather that my surgeon’s experience tells her that the DCIS is probably growing between those two spots. But this is a hypothesis. She won’t know for sure until a pathologist analyzes the tissue later. So, on this surgery day, the UCSF radiologists are going to first compress my breast in a mammogram machine so that it doesn’t jiggle. (Anti-jiggle measures seem to be a big part of breast imaging.) Then they are going to numb my breast and insert hollow core needles to where the clips were placed. They’ll inject dye through the needles. That may result in a tatoo. I hope so; it will make me really cool in my 9-year-old’s eyes. Then, after the dye, they’ll thread really expensive stainless steel wires through the core needles.
Finally, they’ll pull out the needles leaving the wires to bracket the suspected area of cancer, an area where the surgeon can color within the lines. The fellow says that because of the placement of my two marker clips, it may be possible to do the bracketing with only one needle, if they can line up the clips in the same geometric plane. I nod even though I’m a little fuzzy on the one needle part, sign the consent form, then go back to the waiting room until it’s my turn.
After a few minutes, I’m called into the same room where I did my pre-op mammogram. The process is the same as a mammogram, but goes on forever. Pull the breast, squish the breast. Take a picture. Call in the radiologist while the breast is still compressed. Get advice on an adjustment, release the compression for a moment, reposition the breast, try again. The technician is kind, but she’s having a hard time line those two clips up so that only one needle will be necessary. She pulls, and presses and repositions for the better part of an hour, then calls in the most experienced technician, who did my mammogram a few days earlier. This technician says that what the doctors want is just not possible. The younger technician breathes a sigh of relief that it’s not her technique that’s at fault. I breathe a sigh of relief that the endless, strong compression may almost be over.
Finally, they get my tired left breast squished in the way that they want, and it’s time for the shots. The fellow does the injections, first shallow then deep, while I look away and talk to the head of breast imaging, who is the fellow’s teacher and who jokes that she spends a lot of time distracting patients during this procedure. I ask if a German man designed this mammogram machine, because comfort was definitely not on the engineer’s mind. I have had my sternum slammed up against a steel post for an hour. There is nowhere to put my head. The technicians, all women who understand, have put a towel on the steel part under my chin. It’s a sweet gesture, but doesn’t make up for the sadistic design. The attending radiologist laughs, and says that actually, the machine was indeed designed by a German man. She says that she just got an inquiry from a design student who’s interested in making mammogram machines more comfortable. I ask for her card, say I have some definite ideas on this.
Then, suddenly, just as the fellow has placed the first core needle and the attending has slipped her card into my “Patient Belongings” bag, I feel clammy, faint, and very, very sick, bad beyond words. I tell the attending doctor that I feel like I am going to throw up. I’ve got to lie down, now. The team springs into action, releases the breast compression, raises my feet above my heart. I’ve got vaso vago, the fancy medical term for fainting.
As I lie back and technicians apply cold compresses, I apologize for messing up the needle placement; I’m the kind of person who apologizes when someone steps on my feet. The petite attending says not to worry; she had a pro baseball player faint on her once, literally, on her.
After about 15 minutes, I’m back in breast compression mode, but repositioning the needle goes quickly. The anesthetic has had more time to work. They get the first needle in, then the second, in no time. Then the dye, then the wires. The whole team has told me not to look, but as the procedure draws to a close, curiosity gets the better of me. I look left: two long, 6-to-8-inch needles are sticking out of the lower part of my breast, they look like techno feathers in some sort of 21st century native American costume. Little plastic “hubs” cap the ends of them. Out of these, the pricey, stainless steel wires stick out.
Now the fellow has to bend back the wires and clip off the excess, and tape the ends around my breast. The jiggling and the clipping twinges even through the Lidocaine. Then they paste a stainless steel bb on my nipple, and place a smattering of other stickers on my lower breast. My breast is a techno-marvel. Lady Gaga has nothing on me in that moment. She may have a bubble dress, but I’ve got a needle bustier.
The docs place dressings over their handiwork and, amazingly, send me out into the waiting room and my husband so that I can freak out all the women there for routine mammograms. Thank goodness for the flannel blanket in which they swaddle me. I hope most of those women didn’t guess what was under the blanket.
After a while, the technician comes out to walk me and my husband to the surgical floor.
After the endlessness of breast imaging, the pace quickens. My fainting episode has thrown off the schedule, and they want to get me into the operating room. A technician comes in with a lead box containing a syringe with a bit of radioactive marker. She injects it about a half inch above my left nipple. The marker will flow through my breast and into the lymph system, letting the surgeon know which lymph node would be hit first if the cancer turned invasive. While I’m in surgery, a pathologist will look at this “sentinel node” to check for cancer. If he finds something on the first pass, they’ll remove more nodes. I’ve been dreading this injection, but it twinges just a little.
After the radioactive marker injection, a parade of doctors comes by my bed: A handsome Scottish anesthesiologist, and his handsome Indian fellow/student. My surgeon’s handsome fellow makes a visit. If he ever gives up medicine, he could be a model. All these handsome men make the usual questions and formalities so much more fun: date of birth, other medical conditions, response to anesthesia in the past, allergies to medicine, the procedure we’re going to do, consent forms, marking of my left side to please the hospital lawyers. One of the docs jokes that women are NEVER unclear on which breast is being operated on.
The handsome anesthesiology fellow says that I could opt to have a spinal block between the 5th and 7th vertebrae. This would work kind of like the epidural I had during childbirth and would take the edge of the pain in the first day or so. My husband says more pain relief is good, so I say yes to that, even though I really dislike spinal injections.
They put a lovely surgical cap over my hair as the young anesthesiologist adds the “I don’t give a shit” medicine into my IV. I remember going into the OR, sitting up in the gurney, leaning over on a foam block on the operating table while they did the spinal injections. I twinge a bit at the shots, notice the stainless steel trays and the rather intimidating array of surgical tools just beyond the operating table….
…Then I wake up in post-op about two hours later. A nice nurse is guiding a straw into my mouth. The water feels lovely, cool on the back of my throat. I vaguely hear someone—the nurse? my husband?—say that the first lymph node came back negative. They took a piece of tissue about the size of a lime out of the lower part of my breast, what they call the “six o’clock position.”
I still can’t see anything; this time because the lymph incision in my underarm and the breast incision are covered in waterproof dressings. But this part is over, and I have no regrets. I have faced the no see ’ems, for now.